Saturday, August 19, 2017

Cultural Competent Care

Patients' Racial Preferences and the Medical Culture of Accommodation

Kimani Paul-emile 

From: Kimani Paul-emile, Patients' Racial Preferences and the Medical Culture of Accommodation, 60 UCLA Law Review 46 (December, 2012) (196 Footnotes0



      In early November 1931, Juliette Derricotte, Dean of Women at Hampton and Fisk College and former executive of the national YWCA, sustained severe injuries during a car accident. The closest hospital advertised “no Negroes,” so an ambulance was summoned from sixty-six miles away to take her to a hospital that treated black patients. She died of her injuries before she could receive treatment. Similarly, in 1940, John McBride was denied admission at two local south Florida hospitals after suffering a bullet wound. The only two hospitals in the area that accepted black patients were miles away in Miami and West Palm Beach; thus McBride died without hospital care.

      These tragic accounts are stark reminders of a history that many Americans believe is long past. Yet, race discrimination in the provision of healthcare is not a relic of the Jim Crow era. Discrimination still occurs quite frequently, and healthcare providers actively and routinely facilitate it. This modern-day race discrimination assumes a form distinct from the type that led to the deaths of Juliette Derricotte, John McBride, and countless others, and it is in many ways more complex, nuanced, and perplexing. When we think of race discrimination in healthcare today, we tend to think about race-based health disparities and bias exhibited by physicians or other providers, but new studies illuminate a different kind of race discrimination in the hospital setting. Today, rather than turning patients away based on race, healthcare providers are instead facilitating patients' racial biases by enabling them to turn physicians away based on race. In other words, healthcare providers accommodate patients' racial preferences.

      Consider two examples: An older patient of Korean ancestry enters the hospital in very poor health with a condition that is difficult both to diagnose and to treat. He is offered a treatment regimen that promises a better than 50 percent chance of recovery with minimal risks, yet he nevertheless refuses further medical intervention. The hospital thus stops all treatment and the patient would likely have died had a member of the hospital medical staff not noticed that the patient had also requested full cardiopulmonary support should he go into arrest. When confronted with this seeming contradiction, the patient confesses that he does not want to be treated by the assigned physicians, who were of Japanese descent. The physicians accede to the patient's wishes, he accepts treatment, and he makes a full recovery.

      A patient with a potentially life-threatening cardiovascular disorder is taken to the hospital for surgery. Prior to the procedure, the patient's husband demands that the hospital prohibit black men from entering the operating room during the surgery. The surgeon accommodates the patient's request and later explains that he did so because he did not believe that the patient would have otherwise gone through with the surgery. Both examples are real-life accounts of healthcare providers yielding to patients' racially biased demands. Such requests by patients are not only quite common but also are often accommodated quietly.

      A recent study shows that some patients refuse or demand treatment based on the racial identity of the assigned healthcare provider and that providers are likely to accede to these patients' preferences. Research also reveals that patients of all races make race-based choices about who may treat them in hospitals. Many healthcare providers accommodate these requests in circumstances in which the patient has no option for care other than a hospital outpatient department and in situations in which a patient is in need of emergency services. Indeed, according to Herbert Rakatansky, MD, former Chair of the American Medical Association's (AMA) Council on Ethical and Judicial Affairs, “In a life-threatening situation, you would have to abide by the patient's request.”

      The culture of accommodation in the hospital setting has created a clash of competing medical ethics and legal norms: evidence-based and patient-centered approaches to medical care versus accepted notions of racial equality and antidiscrimination principles. Medical ethics, for example, embraces patient-oriented strategies for the provision of care, including the dictates of the Hippocratic Oath, as well as informed-consent rules and common law battery, which make clear that competent patients have a right to refuse unwanted medical treatment. Yet, while the AMA's Code of Medical Ethics maintains that physicians “may not decline to accept patients because of race, color, religion, national origin, sexual orientation, gender identity, or any other basis that would constitute invidious discrimination,” the medical profession does not have a specific policy regarding healthcare institutions accommodating patients' racially biased requests.

      Likewise, the law offers little guidance on how to address this practice. Although several titles of the 1964 Civil Rights Act (CRA) speak to similar types of discrimination--including Title VII, which prohibits employers from catering to the racially biased requests of their clientele--they do not offer a clear legal directive on the issue of hospitals acceding to the racial preferences of their patients. The only case that comes close to approaching this issue is Chaney v. Plainfield Healthcare Center, in which the Seventh Circuit Court of Appeals held that Title VII bars nursing homes from acceding to their residents' racially discriminatory requests with respect to certified nursing assistants. But, for reasons explained in Part III, this case does not meaningfully attend to the matter of hospitals facilitating patients' racial preferences regarding their choice of physician.

      This widespread phenomenon raises difficult questions about how we should think about race, health, and individual autonomy in this context. Should we, for example, think the same way about all the types of preferences expressed? Does the fact that some racial preferences evoke the types of discrimination long outlawed by civil rights statutes render patient racial accommodations problematic? Are there reasons to treat the different examples differently? Questions such as these pose a fundamental dilemma for law, medicine, and ethics. This Article is the first to address these questions and bring into the legal literature an examination of the medical practice of race-based patient accommodation.

      At first blush, antidiscrimination law and general racial-equality principles would seem to bar hospitals from accommodating patients' racial preferences despite the quiet persistence of this practice. This Article makes the counterintuitive claim, however, that the law does and should permit this practice, and that accommodating patients' racial preferences actually advances racial equality. It demonstrates that there are, in fact, many good reasons to allow hospitals to accommodate patients' racial preferences. Recent empirical data on physician-patient race concordance (the ability of a patient to be treated by a healthcare practitioner of the same racial background, ethnic background, or both) show that permitting hospitals to accede to their patients' racial preferences may not only alleviate race-based health disparities but also constitute a life-saving measure for many racial-minority patients. I contend, therefore, that in the absence of countervailing law or of evidence that accommodating expressions of racial preferences would compromise care, and in light of the significant health benefits conferred by this practice, the accommodation of patients' racial preferences with respect to their choice of physician should be preserved in the hospital setting.

      Legal scholars have long debated ways to deal with race in several contexts, particularly in the realms of criminal justice, housing, and education. Relatively little attention, however, has been paid to the ways in which race is deployed in healthcare. This is particularly worrisome because issues of race can affect both patient care and health outcomes. And to the extent that these issues are considered, the focus has been on race-based health disparities and on bias by physicians and other healthcare providers. Yet there has been no analysis in the legal literature of the propriety of healthcare institutions acceding to individual patients' racial prejudices.

      Scholars in other fields, primarily medicine and public health, have attempted to examine this phenomenon empirically by assessing its prevalence, the contexts in which these preferences are exercised, and the connection between patients' preferences and both healthcare utilization and health outcomes. These scholars have tended to base their analyses in autonomy and informed consent, but this literature has not endeavored to address antidiscrimination law and norms.

      This Article, therefore, attempts to advance our understanding of this phenomenon by evaluating federal laws, antidiscrimination norms, evidence-based medical practices, and medical ethics principles in order to draw important conclusions about the phenomenon's legal propriety and medical efficacy. In so doing, the Article offers critical insights into why a form of discrimination that is rightly prohibited in other contexts should be tolerated in the hospital setting.

      The remainder of this Article proceeds as follows. Part I investigates the hospital practice of bowing to patients' race-based requests and the motivation behind physicians' willingness to do so. To this end, Part I examines the first major empirical study to address how physicians respond when they are asked to make compromises to meet patients' racial preferences.

      Part II maps the prevailing medical ethics principles and legal doctrines that operate as default rules governing a patient's right to refuse unwanted medical treatment, including the doctrines of informed consent and common law battery. This Part also addresses the Emergency Medical Treatment and Active Labor Act (EMTALA), which requires hospitals to provide a medical screening examination and medical treatment, if necessary, to any individual who comes to a hospital emergency department requesting treatment for an emergency medical condition. Part II, thus, lays the groundwork in medical ethics for considering the legality and propriety of allowing healthcare providers to submit to a patient's request for or refusal of treatment by a physician of a particular race.

      Part III addresses the antidiscrimination laws that may speak to the accommodation of patients' racial preferences, including Title II, which prohibits commercial entities from catering to the racially biased requests of customers; Title VI, which prohibits race discrimination by any entity receiving federal funds; and Title VII, which precludes employers from acceding to the discriminatory preferences of their clientele. This Part demonstrates, first, that there is no clear legal directive on the issue of hospitals accommodating patients' racial preferences. Second, building on an analysis of recent empirical data on physician-patient race concordance and medical best practices, Part III argues that this practice does not constitute the type of discrimination that these laws were enacted to address. In so doing, this Part demonstrates the ways in which bowing to patients' racial preferences actually constitutes an effective means of improving minority health outcomes, alleviating health disparities among racial groups, and addressing racial subordination in the physician-patient relationship.

      The practice of hospitals accommodating patients' racial preferences, however, is not without its troubling aspects. Therefore, although Part IV argues that patients' race-based requests should be respected in the hospital context, it also acknowledges the difficulties attendant to indulging such requests, and it concludes by proposing policy solutions designed to alleviate the need to yield to patients' racial preferences over the long term.


I. Physicians and the Accommodation of Patients' Preferences

      In 2010, researchers at the University of Michigan Health System and colleagues at the University of Pennsylvania and the University of Rochester published an unprecedented study that received considerable attention within medical circles because it revealed one of medicine's open secrets: how physicians respond to patient requests for providers of the same gender, race, or religion. This first empirical study of the “culture of accommodation” in the hospital setting involved a survey of 127 emergency physicians from around the United States, and its results were unequivocal.

      According to the study, patients often request a physician of a race, gender, or religion different from the one assigned, and such demands are accommodated routinely. Such requests are most frequently granted when the patient is a woman, a racial minority, or a Muslim; and black, Hispanic, and Asian patients tend to believe that they receive better care from doctors of the same race. Female physicians are more likely to accede to reassignment requests, and research shows that doctors at large and academically affiliated hospitals are more likely to accommodate these requests than those at community facilities. Doctors have expressed that they feel a particular need to acquiesce to these requests in urgent situations and in circumstances in which a patient has few, if any, alternate venues for care other than the hospital setting. The findings of the University of Michigan study and other documented accounts of healthcare providers accommodating patients' racial preferences support the author's own interviews with scores of physicians working in hospitals throughout the United States. This, coupled with the fact that demand for hospital emergency services has risen steadily since 1996, suggests that the accommodation of patients' racial biases may be a widespread phenomenon.

      Although physicians are frequently called on to decide whether to accommodate patients' preferences, hospitals lack policies to address this practice. According to Rick Wade, former senior vice president of the American Hospital Association, “Hospitals do a lot of things every day to meet the special requirements of patients. They do that as long as it does not compromise the hospital's ability to deliver good medical care and does not interfere with the operation of the institution. . . . Every patient has the choice of the physician who is in control of their care, and it's up to that physician and the hospital then to assemble the team to do the job.”

      Although patients have long enjoyed the freedom to select personal physicians, and have been able to base their decisions on the physician's race, gender, or ethnicity, in the hospital setting this practice raises unique concerns. Here, the danger does not lie in the patient's own sense of the relevance of race, nor is it simply a matter of the patient exercising private preferences. Rather, the concern is that by bringing their preferences into the hospital setting and demanding accommodations, these patients are confronting healthcare providers with a difficult conflict between their professional obligation to provide nondiscriminatory care and their ethical obligations to respect patients' decisionmaking autonomy and to advance patients' medical best interests.

      In the following Parts, this Article charts a course for how we should think about the practice of accommodating patients' racial preferences both as a legal and as an ethical matter, beginning with a discussion of the significance of EMTALA, informed consent, and battery.


II. The Default Rules: Informed Consent, Common Law Battery, and EMTALA

      Physicians operate in accordance with a code of medical ethics that emphasizes the interests of patients and the obligations of physicians. The basic principles that form the core of this code are nonmaleficence, respect for persons, beneficence, and justice. The concept of nonmaleficence, derived from the Hippocratic Oath, reminds physicians to do no harm. Respect for persons is an understanding that patients must be empowered to make informed and autonomous healthcare decisions. Beneficence is the notion that healthcare providers' primary obligation is to confer benefits while balancing the risks attendant to the provision of healthcare. Justice refers to the fair distribution of scarce resources and respect for individual rights. These obligations form the normative backdrop for a physicians' duty to provide care, and they undergird the prevailing legal doctrines that govern the accommodation of patients' racial preferences in the hospital setting: informed consent, battery, and EMTALA.

      Informed consent, which emerged from the law of battery, is the doctrinal antecedent of the right to refuse unwanted medical care. Indeed, the right of informed consent assumes a corollary right of informed refusal. Thus, a competent patient has a common law and constitutionally protected liberty interest in refusing unwanted medical care. EMTALA, the federal anti-patient-dumping statute, requires hospitals to provide a medical screening examination to any individual who arrives in a hospital emergency department requesting medical treatment.

      This Part illustrates how these laws and legal doctrines operate as guidelines that inform the way physicians and hospitals currently respond to a patient's demand for or refusal of treatment by a physician of a particular race. It begins by examining the advent of the doctrine of informed consent, its roots in the law of battery, and the subsequent formulation of the right to refuse unwanted care. It then sets forth the aims and concerns that prompted the U.S. Congress to enact EMTALA and the ways in which this law shapes decisionmaking in the hospital context with respect to accommodating patients' racial preferences.


A. Informed Consent

      The doctrine of informed consent, which is based on the notion of individual autonomy, has guided virtually all modern physician-patient interactions concerning treatment decisions and has paved the way for the formulation of new patient-centered approaches to medicine. The doctrine evolved as a means of addressing abuses and the fundamental knowledge differential between physician and patient that underlies the inequalities inherent in the treatment relationship.

      Until the middle of the twentieth century, the treatment received by patients in hospitals was far from ideal. According to George Annas, the hospital was “a human rights wasteland,” where the care of patients ranged from benign paternalism to medical experimentation without consent or the possibility of therapeutic benefit. During this period, medical professionals operated under the assumption that medicine was primarily a scientific endeavor, and that physicians--because of their knowledge, experience, and expertise--were uniquely positioned to make decisions regarding their patients' best interests. According to this ethos, patients had neither the interest nor the ability to participate in medical decisionmaking. Thus, physicians routinely refused to counsel patients about important medical treatment options, did not inform patients of their prognosis, particularly when the chance of survival was low, ignored patients' refusal of life-sustaining treatment, and failed to consult patients when exams, tests, or procedures were conducted primarily or solely to educate medical students.

      These abuses were particularly pronounced for African American patients, who, until the 1960s, received health services primarily at large public hospitals, which were the training grounds for inexperienced medical students, interns, and residents. People of color and members of disadvantaged or vulnerable groups were also often used as training material. One particularly infamous example is the Tuskegee syphilis study, in which nearly four hundred African American men with syphilis were systematically denied known, effective medical remedies and were not informed that they were treated for research, rather than diagnostic, purposes. Sustained from 1932 to 1972, the Tuskegee study was the longest experiment in withholding treatment from human subjects in medical history. Ultimately, this and several other shocking examples of physician paternalism and deceit led to the emergence in the late 1960s and early 1970s of the patients' rights movement and the advent of the modern doctrine of informed consent, which has empowered patients and changed the attitude of a new generation of physicians toward their patients.

      Today, physicians are required to obtain a patient's informed approval prior to performing treatment and must disclose information about the risks of the proposed treatment, the alternatives, and the risks of the alternatives. This mandatory information transfer from physician to patient not only safeguards the patient's interests and autonomy but also protects the patient's essential status as a human being, prevents fraud and duress, encourages healthcare providers to consider their decisions carefully, and fosters rational decisionmaking by the patient. By rendering the physician-patient relationship less hierarchical and more dialogic, the informed consent mandate enables healthcare providers to perform with increased sensitivity to a patient's emotional needs, cognitive ability, and actual comprehension.


B. Common Law Battery

      The theoretical underpinnings of the informed consent doctrine emerged from the law of battery, which safeguards a patient's physical integrity. The law of battery protects patients from unwanted or harmful physical contacts. The patient has to demonstrate only that she did not consent to the touching that occurred, which includes the provision of medical treatment by an unwanted medical provider. Hence, to bring an action in battery, a patient must simply prove that any of the following occurred: an unconsented-to provider performed the desired procedure, an unconsented-to treatment or touching occurred, the healthcare provider performed a completely different procedure from that for which consent was given, the provider failed to explain the nature or character of a particular procedure that had been performed, or the provider performed a procedure on the wrong area of the body. Proof of physical injury is not necessary under the battery doctrine. Rather, the focus is on the patient's right to be free from unconsented-to touching.

      Because of the very patient-friendly nature of the battery doctrine, courts in some jurisdictions sought to provide more freedom and protection to medical professionals while promoting patient self-determination and autonomy in medical decisionmaking. They did so, beginning in the 1970s, by limiting the scope of the battery doctrine while establishing the modern doctrine of informed consent as a more balanced alternative. Today, disclosure, respect for patients' autonomous decisionmaking, and the norms established by the battery doctrine are understood as fundamental medical ethics requirements. These principles now undergird federal regulations on human experimentation and guide virtually all healthcare interactions, including the right to refuse unwanted medical treatment and the refusal of treatment by an unwanted physician.


C. The Refusal of Unwanted Medical Care

      Informed consent rules and the battery doctrine form the foundation of a rich jurisprudence on the right to refuse medical treatment, which in turn informs how physicians and hospitals respond to a patient's demands or refusals to be treated by a physician of a particular race. A competent patient--or a patient's legally designated surrogate decisionmaker--has a common law and constitutionally protected right to refuse unwanted medical treatment. It follows, then, that a competent patient has the right to refuse the care of a particular healthcare provider, and informed consent rules and the law of battery dictate that the patient's wishes should control.

      In any situation in which a patient refuses medical treatment, the healthcare institution must first determine whether the patient is competent to make such a decision. If the institution deems the patient competent, then it must respect her wishes and cease all treatment. Here, the focus is not on the reasonableness of the patient's refusal but rather on the patient's preference. During the determination of competence, or at any other time, it may appear as though the patient is not refusing care per se but is instead refusing to receive treatment from a particular healthcare provider for prejudiced reasons. In that case, standard medical ethics procedures require the hospital to assess whether there are underlying factors that may have prompted the request (such as determining whether the patient is experiencing pressure from family members) and, if so, whether they can be addressed through means other than acceding to the patient's biases (such as through the provision of counseling).

      If, however, these factors are absent and the competent patient in the hospital setting cannot be swayed with respect to her demand for or refusal of a provider of a particular race, then the objected-to provider has a legal obligation to stop providing care immediately, and medical ethics counsel that the patient's preferences should be accommodated.


D. EMTALA

      The cumulative effect of these legal doctrines and medical ethics default rules on the practice of hospitals accommodating patients' racial preferences is compounded by EMTALA which imposes specific treatment obligations on Medicare-participating hospitals offering emergency services. In 1986, Congress enacted EMTALA because of concerns about widespread patient dumping--hospitals' denial of emergency care to the indigent, including the transfer or discharge of emergency patients on the basis of high anticipated diagnosis or treatment costs. The law creates a duty of hospitals to perform a medical screening examination when requested by an individual who arrives in the emergency department in order to determine whether an emergency medical condition exists or whether the individual is experiencing active labor. EMTALA applies to anyone in need of medical treatment, regardless of citizenship, legal status, or ability to pay.

      Notably, the EMTALA-imposed duties apply not only to those who come to an emergency department presenting an emergency medical condition but also to any individual who arrives anywhere on the hospital premises requesting medical treatment, irrespective of whether the person is visibly in need of emergency care. The law establishes no duty to provide continuing medical treatment; however, if, during the EMTALA-mandated medical screening an emergency medical condition or active labor is diagnosed, then it is incumbent on the hospital either to stabilize the individual and provide emergency care or to arrange to transfer the patient, with her consent, to a facility that is able to provide appropriate treatment. A physician must certify in writing that the medical benefits of the transfer outweigh the risks to the patient. In addition, the receiving hospital must be capable of providing the needed treatment and must agree to the transfer. A patient also has the right under EMTALA to request a transfer. BBefore the hospital can exercise this option, however, it must first provide the treatment necessary to minimize the risks posed by the transfer.


E. The Operation of the Default Legal Regime

      Informed consent obligations, the right to refuse unwanted medical treatment, the law of battery, and the EMTALA-mandated duty may together present an ethical bind and potential legal liability for hospitals dealing with a patient who wants to obtain or avoid care by a physician of a particular race. Hospital emergency departments serve diverse patient populations, including individuals too impoverished to obtain basic healthcare services elsewhere and individuals who require urgent medical treatment. Patients who seek treatment in hospital emergency departments are typically in poor health and vulnerable, and may be in desperate need of acute care. These individuals have few, if any, alternate venues where they can receive the type of urgent, and often life-saving, treatment offered in a hospital setting. If a patient who desires treatment will not yield in his preference for a provider of a particular race and will not agree to a transfer, then the hospital is faced with the dilemma of choosing between (1) having a physician unwanted by the patient forcibly perform the EMTALA-mandated medical screening, thereby violating informed consent and battery laws, and (2) rejecting the patient in violation of EMTALA, thereby risking liability and the chance that this decision will cause the patient to suffer, experience grievous harm, or die.

      Further, hospital emergency departments operate under significant time pressures, as often the needs of individuals seeking treatment are immediate. As a result, even the delay caused by a hospital deciding between these options could result in death or in imminent, serious bodily injury to the patient and thus contravene the physician's ethical duty to provide appropriate treatment. Thus, in this legal regime, the failure to accede to patients' racial preferences presents healthcare providers with two equally vexing options, both of which carry the risk of legal sanction.

      Although the accommodation of patient racial preference in the hospital setting appears to be consistent with EMTALA and medical ethics norms and practice, does this accommodation violate accepted notions of racial equality? Part III addresses this question in detail.


III. Does the Law Speak to This Issue?: Patient Preference Discrimination and the 1964 Civil Rights Act

      The question looming in any inquiry into the propriety of hospitals accommodating patients' racial preferences with respect to their choice of physician is whether the practice is legal. Indeed, it is difficult to imagine preferences of this sort indulged in any other sector. What is so unique about medicine and the hospital setting that we would accept uses of race that would clearly be deemed problematic, even offensive, in other arenas? In determining the legal legitimacy of this practice, we must look to antidiscrimination laws for guidance.

      Titles II, VI, and VII of the CRA, the most prominent civil rights statute enacted since Reconstruction, outlawed discrimination against individuals based on race, color, or national origin. This broadly remedial, landmark legislation was passed at a time when discrimination was rampant and practiced openly in virtually every aspect of public life. Individuals were routinely denied access to public establishments because of their membership in a disfavored minority group, and with rare exceptions, health and social service organizations in the United States were segregated by race.

      Antidiscrimination laws have been quite effective at curbing blatant race discrimination in most public contexts, but does their reach extend to hospitals yielding to patients' racial biases? This Part examines the antidiscrimination laws that bear on this practice, including Titles II, VI, and VII of the CRA. It contends that these laws fail to offer a clear legal directive on the issues of healthcare providers accommodating patients' racial preferences, and that this practice does not, in fact, constitute the type of invidious discrimination envisioned by the drafters of the CRA. This Part further argues that although acceding to patients' race-based requests may appear to contravene antidiscrimination norms, it is actually consistent with principles of antisubordination and racial equality.


A. Customer Preference Discrimination in Public Accommodations Under Title II

      Title II of the CRA proscribes discrimination by a commercial entity yielding to the racial preferences of its customers. It covers discrimination based on race, color, religion, or national origin by public accommodations “affecting interstate commerce,” which the law defines as hotels, motels, restaurants, theaters, gas stations, bars, recreation areas, and places of exhibition or entertainment. The law was enacted specifically to grant racial minorities full access to public facilities and precludes the owners of such facilities from justifying discrimination by arguing that customers prefer to be served by or share the premises with only individuals of a particular race. Hence, a restaurant would violate Title II if it succumbed to a customer request for a waiter of a race different from that of the one assigned.

      Title II clearly prohibits customer preference discrimination, and while the norms and goals that structure Title II might, at first glance, appear applicable to the hospital context, the Act does not govern this practice because “hospitals are not listed among the establishments to which Title II applies.” Indeed, courts have uniformly held that Title II “sets forth a comprehensive list of establishments that qualify as a place of public accommodation and in so doing excludes from its coverage those categories of establishments not listed.” The “establishments covered by the federal statute do not include hospitals”; therefore, Title II cannot be understood to govern the practice of hospitals complying with patients' requests for physicians of the same race.


B. Customer Preference Discrimination in Employment Under Title VII

      Title VII of the CRA is the primary federal statute addressing employment discrimination. It specifically prohibits employers from discriminating, by motivation or impact, against persons because of race, color, religion, sex, or national origin; and it applies to discrimination with respect to “compensation, terms, conditions, or privileges of employment.”

      The law also makes clear that an employer's wish to cater to the actual or imagined discriminatory preferences of its clientele is generally not a valid defense for treating employees differently based on protected characteristics. Thus, for example, a provider of security services cannot bow to customer preferences for male security guards by reassigning women to inconvenient, lower-paid positions; nor can a telephone marketing firm succumb to a client request that only black employees call black households and white employees call white households.

      The accommodation of patients' racial preferences in the hospital context, however, is decidedly not the typical Title VII scenario; nor does it conform neatly with the types of discrimination that Title VII was enacted to address, which may explain why physicians have not objected to, and indeed have continued to indulge, patients' racial preferences. In fact, there is no case law directly addressing this practice. The only case that comes close to broaching this issue is Chaney v. Plainfield Healthcare Center, in which a black certified nursing assistant (CNA) sued her employer, a nursing home, for race discrimination under Title VII. She alleged that she was subjected to a racially hostile work environment and based her claim, in part, on the fact that the nursing home distributed daily a written assignment schedule for all employees that indicated each patient who “prefers no black CNAs.” The Seventh Circuit held that Title VII prohibits nursing homes from making staffing decisions based on their residents' racially biased wishes with respect to CNAs.

      Although on its face this case bears a resemblance to physicians accommodating patients' racial preferences in the hospital setting, it is distinguishable in ways that may explain why physicians are not challenging this practice despite its prevalence. Most notably, unlike the situation in Chaney, the decision to accede to patients' requests for same-race physicians is made not by hospital administrators but rather by physicians who are deciding among themselves how best to meet each patient's needs. As I explain, physicians' willingness to accommodate is likely due to the unique nature of the physician-patient relationship, which contrasts sharply with that of a CNA and nursing home resident.

      For example, in Chaney, the court appropriately rejected the nursing home's attempt tacitly to exploit a narrow exception to Title VII's antidiscrimination mandate. This exception, known as a bona fide occupational qualification (BFOQ), allows employers openly and legitimately to base employment decisions on sex, religion, or national origin--but not race, which is explicitly excluded. The specific characteristic or attribute must be necessary to the ordinary operation of the particular business or enterprise. More than simply job related, the qualification must be “compelling,” “overriding,” or inextricably linked to the central mission or essence of the job. Thus, the BFOQ defense would permit a theater to hire actors on the basis of gender, or an advertiser of men's clothing lawfully to advertise exclusively for and hire only male models. The employer bears the responsibility of demonstrating that all or substantially all members of the group(s) excluded from the job would be unable to perform the duties of the position.

      The BFOQ defense may also be used as a defense against a charge of accommodating customer preferences in a very limited number of circumstances in which customer privacy is a concern. Thus, for example, although the BFOQ defense will not serve as a valid justification for an airline to hire only women as flight attendants to comply with male customer preferences, the privacy interests of psychiatric patients can justify a BFOQ for personal hygiene attendants of the same sex. To this end, courts have held that for certain workers, such as nursing assistants, hospital delivery room nursing staff, and others involved in assisting individuals with dressing, disrobing, or bathing, gender may be a legitimate BFOQ for accommodating patients' privacy or modesty interests. In Chaney, however, the court correctly held that race is not a relevant factor to consider in addressing privacy concerns, nor is it relevant to the work of CNAs.

      The practice of physicians accommodating patients' racial preferences, in contrast, has not been challenged by physicians nor has it been framed as a BFOQ. This may be due to the fact that unlike the prototypical BFOQ situation, the relationship between physician and patient in the hospital context is not defined by issues of personal modesty but is instead fundamentally diagnostic and therapeutic. Thus, if physicians were challenging this practice--and they are not--then they would have to contend not with a BFOQ defense, but perhaps rather a claim based on the intimate, therapeutic, and diagnostic nature of the physician-patient relationship. This relationship, to be effective, is highly dependent on trust, productive communication, mutual respect, cooperation, participatory decisionmaking, and caring. A patient must be willing to speak candidly about personal and potentially uncomfortable or embarrassing information; to submit to bodily examination, including attention to all manner of injury and abuse; to confide in and communicate openly with the physician; to rely on the physician's recommendations; and to feel confident in the belief that the physician is acting to advance the patient's best interest. In fact, the absence of these elements may mean the difference between life and death for some patients. To this end, the AMA has consistently and unequivocally maintained that a patient's ability to choose a personal physician is a “prerequisite of optimal care and ethical practice.”

      Even beyond the intimately therapeutic character of the physician-patient relationship, there is strong empirical support for the medical efficacy of respecting patients' wishes with regard to their choice of physician. Indeed, as I demonstrate in Part IV, several studies show that this practice can benefit some patients tremendously. In addition, physicians overwhelmingly believe that their primary obligation is to provide the best possible care to individual patients since, according to the AMA Code of Ethics, physicians have “ethical obligations to place patients' welfare above their own self-interest and above obligations to other groups, and to advocate for their patients' welfare.” Thus, to the extent that they must occasionally accommodate patients' racial preferences to satisfy patients' healthcare needs, then the general sentiment among physicians, as explained by one doctor, is that “[w]hile it can be difficult, . . . emergency physicians are there to serve their patients, not act on desires to make a point and try to correct a patient's perception of the world.”

      In addition, physicians may not be challenging the practice of accommodating patients' racial preferences because it does not disparately burden physicians of a particular race, as data revealing the racial diversity of the patients making these types of requests may suggest. Several studies have found that when presented with a choice, patients of all racial and ethnic backgrounds tend to choose physicians of their own group, and all racial and ethnic groups express greater satisfaction with the quality of their care when they are racially concordant with their physician. Finally, physicians' decisions to accommodate may also be based on a belief that patients whose wishes are not respected may be more likely to sue their physicians if something goes wrong. Studies show that patients who dislike or disapprove of their healthcare providers are more likely to file malpractice claims against their providers.

      All told, the unique nature of the physician-patient relationship, the fact that this relationship may be constitutionally protected, the significance of race in the therapeutic enterprise, the fact that the accommodation of patients' racial preferences in the hospital setting does not appear to adversely affect physicians by race, and the evidence demonstrating that acceding to patients' requests has been shown to increase patient satisfaction and improve care all distinguish this practice from the types of discrimination that Title VII was intended to address.


C. Title VI of the Civil Rights Act

      Title VI of the CRA provides that no person “shall, on the grounds of race, color or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” This law was enacted partly as a means of eradicating de jure racial segregation within and among healthcare facilities. Although Title VI is ambiguous with respect to its scope and practical applications, the statute expressly covers hospitals and targets racially discriminatory actions against actual and potential patients by healthcare institutions, including denial of healthcare benefits and services. Title VI has been a powerful force in eliminating the type of discrimination described at the outset of this Article. The law has never been interpreted as governing the accommodation of patients' racial preferences in federally funded hospitals, however, and there are several reasons to believe that this practice does not fall within the ambit of Title VI.

      As a threshold matter, it must be determined who would have standing to bring suit challenging the practice. The patient who is seeking the accommodation is unlikely to challenge the hospital's decision to comply with the request. A physician who sought to challenge a hospitals' staffing decision made in response to a patient's request for physician race concordance would be required to raise her claim under Title VII because “any employment practice of any employer . . . except where a primary objective of the Federal financial assistance is to provide employment” is explicitly exempted from the scope of Title VI.

      Further, the U.S. Supreme Court has rejected a private right of action to enforce Title VI's regulations prohibiting disparate impact discrimination. Hence, if a federally funded entity fails to comply with these regulations, Title VI allows only the funding agency to enforce them. However, the practice of accommodating patients' racial preferences has no disproportionate adverse effect on patients of a particular race because the practice does not deny patients the opportunity to enjoy the benefits of, or partake in the services rendered by, a federally funded hospital.

      In addition, Title VI applies only to intentional discrimination and explicitly targets racially discriminatory actions by hospitals that deny patients the chance to participate in federally funded healthcare benefits and services. Even if discrimination by patients or hospitals against physicians were within the purview of Title VI, the intent behind indulging patients' requests for a physician of a particular race is not to discriminate against physicians but rather to provide optimal care to each patient. And, ironically, this practice may be one of the best available means of enforcing Title VI's mandate to enable individuals to enjoy the benefits of a covered entity or program, regardless of race, color, or national origin.

      Studies are increasingly reporting that the accommodation of patients' racial preferences with respect to their choice of physician in the hospital context may counter the effects of implicit bias, discrimination, and stereotyping by physicians, which negatively affect patient health and contribute to the widespread health disparities among racial and ethnic groups in the United States. Health disparities among racial groups are well documented, as overwhelming evidence demonstrates that racial and ethnic minorities experience poorer-quality healthcare than white Americans, even when controlling for factors such as insurance status and income. Life expectancy and infant mortality are both considered important indicators of population health and are critical gauges of access to and quality of medical care, socioeconomic conditions, maternal health, and public health practices. Although life expectancy in the United States increased during the twentieth century, the infant mortality rate for African Americans is up to three times higher than that of other races, and African American life expectancy at birth remains more than four years below that of European Americans. The mortality rate is 21 percent higher for blacks than for whites, and the age-adjusted death rate for the black population exceeds that for the white population by 47 percent for stroke (cerebrovascular disease), 30 percent for heart disease, 20 percent for cancer (malignant neoplasms), 106 percent for diabetes, and 800 percent for HIV. Researchers found that closing the black-white mortality gap would avoid an astonishing “83,000 excess deaths per year among African Americans.”

      According to the Centers for Disease Control and Prevention, the rate of high blood pressure for blacks is nearly double that of whites; blacks, Hispanics, and American Indians have higher rates of HIV infection than whites, while Asians have the lowest rates of infection; and diabetes is more prevalent among blacks and Mexican Americans than whites. Race-based disparities in health outcomes are manifest across all areas of medical care and healthcare contexts.

      Although many factors contribute to creating and sustaining these widespread health disparities, including social and economic influences, studies have found that implicit bias, discrimination, and stereotyping by physicians play a significant role in producing the health differentials that cleave along racial lines. Evidence shows that race has a significant independent effect on physicians' perceptions of patients. For example, a 2011 Johns Hopkins study revealed that 69 percent of medical students surveyed exhibited implicit preferences for white people. Other studies have found that physicians tend to rate African American patients more negatively than whites on a number of registers, including intelligence, compliance, and propensity to engage in high-risk health behaviors.

      Physicians may convey their negative attitudes to minority patients through nonverbal cues and verbal tones or inflections, which may deter some patients from seeking care or complying with medical regimens. These negative attitudes may also shape a patient's experience of a clinical encounter with a physician. Several broad-based studies have found that minority patients perceive less respect in race-disconcordant relationships with physicians, that black Americans were almost twice as likely as their white counterparts (16 percent versus 9 percent) to report being treated with disrespect by a racially disconcordant physician, and that 15 percent of black Americans surveyed believed that they would receive better care if they were of a different race or ethnicity. Further, African American, Hispanic, and Asian patients in race-disconcordant relationships report difficulties communicating with physicians at substantially higher rates than white patients in race-discordant relationships.

      Researchers have also found that bias in interpersonal aspects of the physician-patient relationship, whether conscious or unconscious, may influence physicians' clinical decisionmaking and may negatively affect treatment recommendations, including the quality and type of care administered to minority patients. In one study published in the New England Journal of Medicine, a group of physicians were shown a series of randomly assigned videos. Each depicted an actor portraying a patient and describing symptoms suggestive of cardiovascular disease. All patients were dressed identically, had identical health insurance, described their symptoms in identical terms, and presented identical diagnostic tests. Race and sex were their only distinguishing characteristics. The study found that diagnosis and treatment recommendations varied according to race and sex and that black women were least likely to be referred for diagnostic testing and treatment.

      Further, a broad-based, national study conducted in 2003 by the Institute of Medicine (IOM), at the request of Congress, revealed that racial and ethnic minorities receive inferior care compared with nonminorities across a spectrum of diseases, including cancer, cardiovascular disease, HIV/AIDS, diabetes, mental health, and other chronic and infectious diseases. These treatment disparities persisted even when access-related factors, such as insurance status and income, were controlled, and even when preferences and clinical factors were considered, including state of disease presentation, comorbidities, age, and severity of disease. Subsequent research has supported the IOM's conclusions. Other studies have found that racial and ethnic minorities are less likely to undergo bypass surgery or to receive kidney dialysis or transplants, and are more likely to undergo less desirable procedures, such as lower limb amputations for diabetes. Further, physicians in hospital emergency departments prescribe fewer analgesics for black and Latino patients despite similar estimates of pain among groups. Plus, among trauma patients, race is independently associated with higher mortality.

      The data thus shows that medical practice remains rife with racial bias and that minority patients often receive substandard healthcare because of physician prejudice. Meanwhile, respecting patients' requests for physician-patient race concordance offers significant benefits, particularly for racial minority patients, including greater patient satisfaction, increased access to preventative care, more effective physician-patient communication, and more participatory decisionmaking, which are all necessary aspects of effective medical treatment. Therefore, accommodating patients' racial preferences may constitute an effective means of counteracting the effects of physician bias while satisfying Title VI's aim of ensuring that all patients are able to participate in and benefit from federally funded hospitals.

      Title VI adopts the strict scrutiny standard of review, according to which the covered entity must prove that its action serves a compelling governmental interest and is essential to achieving that interest (that is, the least restrictive means of realizing that interest). Although this is a high bar, improving patient care, countering racial bias, reducing race-based health disparities, and saving lives should qualify as a compelling interest that justifies bowing to patients' racial preferences. Moreover, the practice of accommodating patients' choices furthers compelling interests in improving healthcare and is narrowly tailored to achieve this interest to the extent that it applies only to those patients who are resolute in their decisions to forego necessary care if their preferences are not accommodated.


IV. How to Think About the Accommodation of Patients' Racial Preferences

      Accommodating patients' racial preferences with respect to their choice of physician is an important and enduring practice in the hospital context. Part II demonstrated that EMTALA, along with deeply rooted norms of informed consent and battery, makes clear that there are valid reasons to accommodate. I have also shown that existing antidiscrimination law does not prohibit the practice. As I describe in this Part, however, there are also troubling aspects of indulging patients' racial biases. Thus, we are faced with the fundamental dilemma of how to reconcile these troubling aspects with respect for patient autonomy and the empirical reality that accommodating patients' racial preferences appears to foster positive health outcomes.

      This Part engages this dilemma. Building on the empirical evidence introduced in Part III, this Part makes an affirmative case for accommodating patients' racial preferences with respect to their choice of physician but acknowledges that there are also disadvantages to indulging such requests. This Part addresses the disturbing facets of this practice and concludes by proposing policy solutions designed to alleviate the need for accommodation.


A. The Case for Accommodation and Its Limitations

      The case for accommodation can be understood to rest on several core empirical insights, including research showing that patients whose racial preferences are respected regarding their choice of physician show higher levels of satisfaction in their clinical encounters and that for some patients having a physician of the same racial background confers substantial health benefits. Indeed, several recent studies on the health benefits of physician-patient race concordance show that such concordance is associated with higher levels of patient-centered communication. And even after adjusting for patient age, gender, education, marital status, health status, and the length of the physician-patient relationship, researchers have found that race-concordant physician-patient relationships tend to promote more participatory decisionmaking.

      One study found that race-concordant healthcare visits are longer than disconcordant visits, and this held true even when researchers accounted for criteria associated with longer patient visits, such as older age, higher socioeconomic status, and inferior health status. The duration of a patient's visit with a provider is considered an important indicator of the quality of care, and patients report that during these longer visits they experience greater ease discussing problems and making decisions. Notably, black patients in a racially concordant relationship with their physicians are more likely to view their healthcare visits as highly participatory, to be more satisfied with their treatment, and to receive preventive care and necessary medical interventions.

      In a different study, nearly one-quarter of African Americans and one-third of Latinos reported a preference for same-race healthcare providers, and most chose racially concordant physicians because of personal preferences not solely because of reasons of geographic accessibility. Studies suggest that for these patients physician-patient race concordance not only affects the quality of the interactions but can also improve health outcomes.

      In addition to these research findings, EMTALA, medical ethics principles, and the doctrines of informed consent and battery are consistent with the accommodation of patients' racial preferences even if they do not require it. Furthermore, as I have argued, the patchwork of civil rights laws that address race discrimination cannot be read to bar this practice.

      Under these circumstances, in order to advance antidiscrimination norms meaningfully--in substance rather than just in form--I argue that we should conceptualize the issue of accommodating patients' racial preferences not in terms of the rigid application of formal antidiscrimination principles but rather through an antisubordination lens. By this I mean that we should address the negative impact that centuries of race discrimination have had on members of disadvantaged groups by allowing for the consideration of race in some circumstances rather than adopt a formalist approach that would view any consideration of race as problematic. As noted in Part II, EMTALA and the modern doctrines of battery and informed consent emerged in part to protect poor and racial-minority patients from patient dumping, nonconsensual treatment, and battery in medical practice and clinical research. Prohibiting the accommodation of patients' racial preferences in light of recent evidence of pervasive physician bias may, ironically, jeopardize the health of racial minority patients by rendering them vulnerable to the kinds of abuses against which these laws and legal doctrines were established to guard.


B. The Limits of Accommodation

      Although the accommodation of patients' racial preferences appears to confer significant benefits to patients of all races, we may still be troubled by the difficulty of distinguishing between legitimate expressions of racial preference for physician race concordance and those based in racism or bigotry. Undoubtedly, there are many reasons why patients may request or decline treatment by physicians of a particular racial or ethnic background. These reasons include positive prior experiences in racially concordant relationships, negative past experiences with physician bias in racially disconcordant relationship, and racism--namely, bigotry or prejudices about members of certain racial and ethnic groups other than one's own.

      Patients who have had positive experiences with people of the same racial or cultural background may be more trusting of and feel more comfortable with physicians who share their racial or cultural characteristics. This sense of sharing a common culture or social experience may also lead patients to believe (rightly or wrongly) that a physician of a similar racial group is more likely to promote and protect their interests and to exercise more sensitive care with regard to treatment.

      Negative experiences may also drive a patient toward rejecting or requesting a physician of a particular racial background, as preferences may be shaped by lingering distrust resulting from one's own or others' prior experiences of racial bias, discrimination, or discourteous or substandard care. While segregation and blatant racial discrimination are no longer the norm in medicine, numerous studies report that more subtle forms of discrimination endure. Although most patients are sensitive to the interpersonal dynamic that occurs in medical encounters, black patients may be acutely aware of interpersonal cues from physicians because of historical and personal experiences with discrimination in healthcare and in society at large. Research on racial stigma suggests that individuals cope with the threat of bias or discrimination by avoiding interactions with the stigmatizing group. Thus, to avoid negative encounters, racial minorities (who are more likely to experience discrimination while seeking health services) may prefer physician-patient racial concordance or reject physicians who are members of a perceived stigmatizing group.

      Finally, a patient's request for or refusal of treatment by a physician of a particular race may also be a manifestation of racism. For example, during the period of legally sanctioned segregation, many white professionals and the lay public openly expressed the belief that the medical care provided by black physicians was necessarily of poor quality.

      The source of patients' racial preferences with respect to their choice of physicians should play a part in determining appropriate policy solutions. Standard medical practice requires those who express these preferences to undergo an ethics consultation to determine not only the strength of their conviction but also to impress on the patient the advantages of working with the assigned physician. Yet in a life-threatening situation or when the patient has no alternate venue for medical care, is firm in her decision, and cannot be deterred; EMTALA, battery, and medical ethics rules counsel that the patient's preferences be respected.

      Still, the notion of white patients rejecting minority physicians for bigoted reasons in emergency departments and other hospital settings is deeply troubling and uncomfortably reminiscent of the type of discrimination that the civil rights statutes were designed to eliminate. This concern complicates emergency department physicians' duty to provide necessary treatment and their efforts to uphold their promise under the Hippocratic Oath to do no harm. It also underscores a fundamental tension between their roles as healers and as conservators of widely shared moral precepts.

      The reality, however, is that this problem may seldom arise, as a recent study found that requests for treatment by a physician of a particular race are most often accommodated when made by racial minority patients. This practice may be justified to the extent that racial and ethnic minority patients are statistically more likely than white patients to experience discriminatory treatment in a racially disconcordant physician-patient encounter. Moreover, the chance of experiencing such discriminatory treatment is heightened in the hospital environment, which is “ripe for misunderstandings, stereotyping, and poor collaboration,” as physicians who work in hospital emergency departments are often fatigued and must operate under significant time constraints. Research indicates that individuals often rely on unconscious biases and stereotyping in such circumstances as these cognitive processes allow individuals to evaluate complex information quickly through the use of social categories. The negative consequences of this behavior are likely to have a disproportionate effect on blacks and Latinos.

      None of this is to suggest that we should not remain concerned about racist motives among patients. Nevertheless, substantial empirical data attests to the medical significance and benefits of accommodating patients' racial preferences, and to the extent that evidence shows unequivocally that it improves health outcomes and may contribute to the reduction of race-based health disparities, then we should respect patients' racial preferences in the hospital context.


C. Beyond Accommodation

      As this Article demonstrates, there are immense benefits to accommodating patients' racial preferences in the hospital setting, including improving the quality of care provided to minority populations and addressing racial and ethnic health differentials. Nevertheless, this Article has shown that this practice is not without its limitations, as it offers neither a complete nor a fully satisfying solution to the problems of race-based health disparities and physician bias. To devise appropriate, long-term means of addressing these concerns, the medical profession must go beyond accommodating patients' racial preferences to expanding cultural awareness at all levels of practice and training to enable providers to interact more effectively with various patient populations. The profession must also increase diversity among providers as a means of encouraging tolerance and understanding of other cultures.

      In order to train physicians to better comprehend and address the specific needs of a diverse patient population, in recent years, the medical profession and medical schools have focused on providing culturally competent care, which, according to the IOM, requires the provision of care “that is respectful of and responsive to individual patient preferences, needs, and values.” The idea behind culturally competent care is the promotion of greater “physician understanding of social, cultural, and economic factors that influence their patients,” and the fostering of an effective patient-physician relationship. Thus, the American College of Physicians, the largest medical specialty society in the United States, recommends that “[p]hysicians and other health care professionals must be sensitive to cultural diversity among patients and recognize that preconceived perceptions of minority patients may play a role in their treatment and contribute to disparities in health care among racial and ethnic minorities.”

      Cultural-competency training is necessary at all levels of medical education and professional practice, as a 2011 Johns Hopkins study found that medical students may actually learn to treat nonwhite patients differently from white patients. While survey data shows that virtually all medical residents recognize the importance of addressing cultural-competency issues, nearly one in five believes that they were ill prepared to care for individuals who did not share their Anglo-American cultural beliefs regarding the practice of medicine. Many medical residents also report that they lack professional mentorship in the area of cross-cultural care and are seldom evaluated on their cultural-competency skills.

      Therefore, although cultural-competency training is critical to fostering trust and communication--two elements necessary to an effective physician-patient relationship--and to improving health outcomes and reducing health disparities, studies make clear that more needs to be done to bridge the gap. Medical schools must also create an environment where students can interact with a racially and ethnically diverse cohort, faculty, and community of mentors because this, as much as textbooks and clinical learning, is a necessary and integral part of a quality medical education and an important means of promoting understanding between future physicians and their prospective patients. Yet, despite the fact that research reveals that students in a diverse student body demonstrate better cultural competency and cross-cultural training than those trained in a more racially and ethnically homogeneous academic environment, of more than 16,000 medical school graduates in 2008, only 2447 were African American, Hispanic, or Native American.

      Among the many benefits of a multicultural medical school environment is its potential to increase the racial and ethnic diversity within the ranks of the profession. Members of racial and ethnic minority populations are severely underrepresented in the medical profession. Although African Americans, Hispanics, and Native Americans constitute over 25 percent of the nation's population, in 2007 African Americans accounted for only 3.5 percent, Hispanics 5 percent, and Native Americans and Native Alaskans 0.2 percent of physicians.

      A multicultural physician workforce that reflects the country's racial and ethnic diversity and that is more representative of the patients it serves may not only improve patient satisfaction, strengthen cultural competence, and promote sensitivity and tolerance among health professionals; it may also facilitate quality care and reduce physician biases along with the need for the accommodation of patients' racial preferences.


Conclusion

      Despite this country's long and sordid history of race discrimination in healthcare, race remains of significant salience in medicine, and there are ways in which it is still being used that are neither widely discussed nor fully regulated. Although the common, if little debated, practice of physicians acceding to patients' racial preferences in the hospital setting might, at first glance, appear to perpetuate this history of inequality and violate antidiscrimination laws, as this Article makes clear, there are several important reasons why physicians quietly, but routinely, engage in this practice and why antidiscrimination laws have not been and should not be interpreted to reach this conduct.

      Numerous studies show that physician-patient race concordance confers tremendous health benefits to patients, particularly those from racial minority populations, and advances antisubordination norms. Therefore, until we improve diversity within medical education and the profession, and unless we effectively educate and train a more culturally competent corps of physicians, we must preserve the practice of accommodating patients' racial preferences in the hospital setting. Indeed, although the kind of discrimination that Juliette Derricotte and John McBride faced is no longer permitted, it may be, ironically, that accommodating patients' own racial preferences within hospitals not only comports with our normative commitments to racial equality but also constitutes one of the most effective means currently available to advance racial justice in healthcare, and, quite possibly, to save patients' lives.


    Kimani Paul-Emile is Associate Professor of Law at Fordham University School of Law.

Examining the “Stick” of Accreditation for Medical Schools Through Reproductive Justice Lens: A Transformative Remedy for Teaching the Tuskegee Syphilis Study

Deleso Alford Washington


Deleso Alford Washington, Examining the “Stick” of Accreditation for Medical Schools Through Reproductive Justice Lens: a Transformative Remedy for Teaching the Tuskegee Syphilis Study, 26 Journal of Civil Rights & Economic Development 153 (Fall 2011) (207 Footnotes)

 

 

First, it is important to note that the “The Tuskegee Study of Untreated Syphilis in the Male Negro” is the original name for the study that is commonly known as “The Tuskegee Study.” The shortening of the official name of the study not only diminishes the truth behind “untreated syphilis” and specific targeting of a gender and racial group (“the male negro”), but, it also speaks to the need to address Black women and the Tuskegee Syphilis Study. This omission of Black women in the legal, medical, and historical narratives of the Tuskegee Study illustrates the marginalization of Black women in medical research and education, which this Article seeks to address. Therefore, this Article will address a traditionally overlooked, historically marginalized and devalued aspect of our society: women in general and in particular, Black women, specifically in relation to healthcare, research and medical education.

The Tuskegee Syphilis Study, like the traditional recounting of the event, failed to acknowledge the direct impact of untreated syphilis in women. Arguably, the most infamous biomedical research study ever performed by the United States government is the Tuskegee Syphilis Study, which occurred between 1932 and 1972 in Macon County, Alabama. The stated purpose of the Tuskegee Syphilis Study was to determine the effects of untreated syphilis on Black men in Macon County, Alabama. Accordingly, historical and legal accounts have primarily told the stories of *155 the male participants of the Study. However, an overlooked yet important question looms: What about the women of the Tuskegee Syphilis Study? To date, there have not been consistent and adequate substantive challenges to the omission of the women affected by the study, whether in historical accounts or contemporary bioethical discourse. This Article fills the gap in this historical and contemporary omission by calling for a reproductive justice framework to not only critically examine the Tuskegee Syphilis Study, but also to offer curricular content on cultural competency to aid medical schools in their quest to attain accreditation. This approach engenders an identifiable “space” that acknowledges the Black women who also sustained injuries from the Tuskegee Syphilis Study and centers the reproductive health issues pertaining to women of color in a medical educational setting that will “respond to the need to ensure that all people entering the health care system receive equitable and effective treatment in a culturally and linguistically appropriate manner.”

Medical schools must deliver a culturally competent curriculum for purposes of accreditation. This article will shed light on race, gender, and class disparities in healthcare. Specifically, I will address the marginalization of women in the historical and contemporary recounting of the Tuskegee Syphilis Study. This Article contends that the Tuskegee Syphilis Study's failure to acknowledge the direct impact on women requires a transformative remedy to address cultural competence accreditation mandates for medical education.

Section I critically examines the Tuskegee Syphilis Study. Section II focuses on current medical schools' accreditation standards on cultural *156 competence, and their stated criteria. Finally, Section III explores the notion of a reproductive justice framework that will serve as a transformative remedy to address current medical education accreditation standards. The implementation of an inclusive curricular content that acknowledges the direct impact of the women in the Tuskegee Syphilis Study can serve as a step toward addressing a historically accepted omission that impairs the ability of medical schools to satisfy current cultural competence accreditation standards.


I. The Tuskegee Syphilis Study Revisited
 

The ultimate lesson that many Americans saw in the Tuskegee Study was the need to protect society from scientific pursuits that ignored human values.

A critical examination of the most widely disseminated papers, books, reports and other written documents about the Tuskegee Study reveals that the “Study” was misleading in its purpose as well as its method of securing participants. According to James H. Jones, “[t]he Tuskegee Study had nothing to do with treatment. No new drugs were tested, nor were any efforts made to establish the efficacy of old forms of treatment. It was a nontherapeutic experiment, aimed at compiling data on the effects of the spontaneous evolution of syphilis on black males.” This section will explore how the data was compiled by assessing the institutions involved, the selected human subjects, and duration of the experiment in order to contextualize the biomedical significance of the Tuskegee Syphilis Study.


*157 A. The Institutions - In Black and White

There is a fundamental question that should be posed when reconsidering a historical event such as the Tuskegee Syphilis Study: “How could this episode, requiring the collaboration of doctors, county and state health departments, draft boards, and the U.S. Public Health Service, ever have occurred? As noted historian Allan Brandt suggests, the Tuskegee study must be understood with regard to the “essentially racist nature of the experiment.” The horrific nature of the study, along with its intended and collateral consequences, is “especially appalling because it was officially sanctioned by the federal government and involved life or death situations for several hundred United States citizens.” Brandt argues that, [t]he experiment was based upon two essentially racists precepts. First, the doctors who designed the study believed that virtually all southern blacks were infected.

A closer examination of the institutions involved, the U.S. public health care system, the parties affected, and the location of the Tuskegee Syphilis experiment supports an accepted practice of “scientific racism that pervades American health institutions, historically and contemporaneously, and reflects the devaluation of Black human rights and lives in the health system.”

The federal government's effort to address venereal disease, including syphilis, began in response to the returning veterans from World War I. Treatment for syphilis that would reach poor, rural communities such as Macon County, Alabama came in the form of an alliance between the *158 philanthropic Rosenwald Fund and the U.S. Public Health Service (PHS), which sought to “expand medical services to the poorest African American areas of the South.”

The Rosenwald Fund division that supported syphilis-control demonstration programs was established in November 1929. The Rosenwald Fund's connection to the Tuskegee Institute (now Tuskegee University), was seldom discussed in the broader context of the Tuskegee Syphilis Study, but played an important role in regards to the level of trust within the community surrounding free medical treatment from doctors during health demonstrations. In January 1930, the Fund began demonstration programs in Macon County, Alabama and five other sites recommended by the PHS. The initial experiment funded by Rosenwald exemplified the greatest kindliness. The result of the Rosenwald Study confirmed that mass treatment could be successfully implemented among rural blacks.

In May 1930, Dr. H.L. Harris, Jr., a Black physician employed by the *159 Rosenwald Fund, conducted a site visit to evaluate the syphilis control demonstrations and reported that the people “were entirely ignorant of the character of disease for which they were being treated.” It appears that “[p]ublic health officials announced that they had come to test people for “bad blood.” First-hand accounts from individuals indicate that “bad blood” was an accepted term in the community that referred to many different ailments - without any social embarrassment of a disease. In fact, among the over 600 families that Johnson interviewed for his book, Shadow of the Plantation, there was no connection of syphilis to a sexual act. The condition of “bad blood” was spoken of in the same manner as one speaks of having a “bad heart” or “bad teeth.”

In the Fall of 1930, Dr. Harris' second report noted that some 1,271 cases of syphilis had been brought under treatement in the six clinics that were operating in Macon County. However, by the end of the site visit, Dr. Harris did not recommend that the syphilis control demonstration in Macon County continue, because it had “accomplished practically all that can be hoped from it.” The alleged success of the Rosenwald Fund experiment lies in the eyes of the beholder. Attorney Fred Gray puts it best, “[t]he Rosenwald/Public Health Service projects during 1930-31 were almost too successful. Approximately forty thousand persons were tested for syphilis in the six counties surveyed, and 25 percent were found to be infected.”

Despite the harsh realities of Dr. Harris' final report, it appears that the notion of any treatment or care by a physician garnered a degree of benevolence from the people of Macon County. The doctors and researchers involved saw Macon County as a prime opportunity to study untreated syphilis. The men, women, and children who stood in long lines seeking treatment for their ailments maintained an “attitude of appreciation for the gesture of helpfulness which the demonstration *160 represented. . . . Many of the families [were] enthusiastic in their praise of the work being done by the clinic.” This is evidenced by comments made by a wife in a family consisting of a mother, father and ten children who received treatment: “Them shots really hoped [helped] me.” However, not every patient was as complimentary. A patient interviewed by Johnson's team criticized the bedside manner of the “government doctor” that treated him; he recounts: “‘He lay our arms down like he guttin’ a hog,' the man complained. ‘I told him he hurt me. He told me ‘I'm the doctor.’ I told him all right but this my arm.”' Overall, the Rosenwald demonstrations gained positive public support, trust for public health care treatment, and goodwill. The Tuskegee Syphilis experiment misappropriated this support, trust, and goodwill and ultimately engendered and thereby exploited the Black test subjects by misrepresenting the Study's intended purpose: not to treat their ailments but to study the effects of untreated syphilis.


B. The Human Subjects - Intended and Collateral Consequences

The Tuskegee Syphilis Study and its intended consequences should be contextualized in terms of addressing racism, research, and the U.S. healthcare system. Medical schools typically recount the Tuskegee Syphilis Study, notably the most infamous biomedical study in U.S. history, without acknowledging the direct impact on the women who were not part of the study but nonetheless sustained “collateral consequences.” This omission furthers the existing race, gender, and class disparities in healthcare generally, and specifically the marginalization of women as *161 research subjects. The historically marginalized issues of race, gender, and research in the Tuskegee Syphilis Study must be acknowledged in order to begin to address current health disparities amongst women.

In order to cast light on the historical marginalization of women impacted by the Tuskegee Syphilis Study, the site and human subjects selected for the study must be critically examined. Dr. Taliafero Clark, Chief of the PHS Venereal Disease Division and author of the Rosenwald Study, is identified as the lead advocate in the decision to create the Tuskegee Study of Untreated Syphilis in the Negro Male. Macon County, Alabama, the chosen site for the experiment - a county with an 82 percent population of Blacks, a high incidence rate of syphilis, cooperative local and state officials, community goodwill, and a unique vulnerability to participate in another Rosenwald-type treatment programs, proved to serve as a “live laboratory.” As Dr. Clark reasoned; “[i]f there were no funds to treat the syphilis problem in Macon County, at least a scientific experiment might be a way to learn something from it.” Washington explains that the PHS expected to “validate its belief in a specific racial dimorphism of syphilis . . . it was thought to wreak its worst havoc on the cardiovascular system of Blacks, sparing their relatively primitive and ‘underdeveloped’ brains.”

James H. Jones correctly points out that “[i]t is necessary to place the Tuskegee Study within its historical and institutional context,” and explains how the experiment “fits into the development of the public health movement in the United States.” In order to understand how the Study could have ever occurred and for how long it occurred, one must acknowledge the salience of race and the interaction between race and *162 medicine.

The gender selection for the participants in the Tuskegee Syphilis Study was restricted to males from the very onset, during a meeting initiated by Dr. Clark with members of the “Cooperative Clinical Group, an association of medical researchers composed of the most distinguished syphilologists in the United States.” Jones surmises that the resort to only male participants among the consulting doctors goes to “what every good clinician knows”:

[W]omen often fail to recognize the early symptoms of the disease because their genitals are largely internal and because the early symptoms are frequently mild and can easily be mistaken for unrelated problems involving vaginal itching and burning. By the time more severe symptoms develop and force them to seek medical care, women often learn to their dismay that the disease is well advanced. They also find it hard to pinpoint for their physicians when the early symptoms of the disease appeared, making it difficult to determine when the disease was contracted.

Although the all-white, all-male coalition purportedly made their decision on the basis of biology and irrefutable facts regarding the location of male/female genitalia, it should be noted that the first Rosenwald-type experiment accepted all ages of both sexes and treated as many participants as the demonstration would accept. Therefore, the Tuskegee Syphilis Study's election to use all males should be reexamined in light of a historical representation of “[b]iomedical research [failing] to address the health needs of women” by explicitly excluding all women in the protocol. It is imperative to acknowledge that the Black women of the Macon County, Alabama, both historically and presently, is unique in that Black women were excluded not only on the basis of gender, but also race, and such women have been generalized as part of a distinct race: the “notoriously syphilis soaked race.” Hence, the Black women directly *163 impacted by the effect of untreated syphilis were not deemed “worthy” of study.

The historical omission of the women directly impacted by the Tuskegee Syphilis Study speaks to Dorothy E. Roberts' argument that “because women of color experience the intersection of gender and racial oppression, they may have unique critical insights to offer mainstream feminist theory and practice.” Knowledge of the historical marginalization of Black women in the Tuskegee Syphilis Study would aid future doctors and researchers in their decision-making when faced with the call regarding which sex to study. The critical insight afforded to teaching medical students about the Tuskegee Syphilis Study lies in acknowledging the biomedical significance of overlooking the women directly impacted from the study, both in the past and today. Susan M. Wolf recognizes the Tuskegee Syphilis Study performed by the U.S. Public Health Service on [Blacks] amongst the foundational events contributing to the field of bioethics.” Hence, medical education can no longer afford not to study the Tuskegee Syphilis Study from a reproductive justice framework (discussed in Section III in greater detail), which tells the “her-story” of *164 the women of the Tuskegee Syphilis Study in order to adequately address the current accreditation mandate for cultural competency. Though the doctors did not believe that studying women was important and thus they were intentionally excluded, the women's experiences were indeed significant.

It should be noted that “[the] preoccupation with personal responsibility for disease assured syphilis a prominent place in the medical discussion of [B]lack health.” The truth of the matter is that the microbe causing syphilis had been discovered by German researchers in 1905, and a therapy for treating the disease was later discovered in 1910. Late nineteenth century physicians earnestly believed that they were on the eve of a discovery. Nonetheless, the longest standing experiment with human subjects in medical history was executed in Macon County, Alabama to study the effect of untreated syphilis on negro males. A brief overview of the disease, which was not being treated, follows:

The disease is caused by a type of bacterial organism named Spirochaeta pallida, or, more specifically, Treponema pallidum, a spirochete. Spirochetes are named for their spiral shape: Under a microscope, the wormlike bacteria wiggle furiously. T. pallidum can be acquired through sexual activity or congenitally, from an infected mother. In the initial stage of sexually transmitted syphilis, a chancre, or hard, painless sore, appears on the genitals or other point of entry, followed by flulike symptoms. If the disease is not treated, it enters a long latent secondary stage before emerging to *165 inflict an assortment of skin growths, running sores, gumma, bone decay, and heart damage. The final, tertiary, stage of syphilis may erupt several decades later, causing profound neurological damage- blindness, insanity (paresis), paralysis, and death.

This article calls for a critical examination of the devastation caused by the Tuskegee Syphilis Study to both males and females.


C. The Space: “The mere imparting of information is not education.” - Carter G. Woodson

The Tuskegee Syphilis Study reigns as the most infamous reminder of government-initiated unethical conduct meted upon human subjects. However, the prevailing issues of race, gender, and healthcare that have been historically under-discussed in a medical education setting are currently being mandated under the auspice of cultural competence. Medical education provides a venue for an optimal understanding that “[c]ultural competence can be viewed in relation to general competence in professional medical practice as an integrated aspect of overall competence.” Pursuant to the Office of Minority Health:

In addition to defining cultural competence as essential to professional competence in general, cultural competence can be defined in terms of the power dynamics in medicine as well as society at large. The need for cultural competence arises from inherent power differential in the physician-patient relationship [ ]. Ethnicity and social status are inextricably linked [ ], and social issues such as stereotyping, institutionalized racism, and dominant-group privilege are as real in the examining room as they are in society at large. Therefore, the goal of cultural competence training in health care should be to guide physicians in bringing these power imbalances into check. This process, consisting of ongoing self-reflection and self-critique, requires *166 humility.

“Today, as before, the Tuskegee Study has much to teach us about racism in the United States and the social warrant of medicine in people's lives.” The need to contextualize the purported “training” object of the Rosenwald/PHS alliance is wholly under-analyzed and would benefit from applying a notion of Critical Race Feminist Bioethics (“CRF Bioethics”). The biomedical significance of the Tuskegee Syphilis Study becomes more apparent in light of the fact that “[t]he program's medical services were designed to meet the Fund's long-range goals. The demonstrations would provide training for “private physicians, white and colored, in the elements of venereal diseases treatments” and the “more extensive distribution of anti-syphilitic drugs and the promotion of wider use of State diagnostic laboratory facilities.” Todd L. Savitt correctly points outs that “[t]hroughout history medicine has required bodies for teaching purposes.” The more introspective issue, however, is “whose body has the U.S. healthcare system historically exploited or marginalized due to the intersection of race, gender and research?” Medical schools should address this question as they train future doctors about the human toll in pursuit of medical research and training.


II.  Medical School Accreditation: Purpose and Vision

 

. .[T]he scientific blindspot to ethical issues that was responsible for the Tuskegee Study--what the [Atlanta] Constitution called “a moral astigmatism that saw these black sufferers simply as ‘subjects' in a study, not as human beings.”

Medical schools and graduate residency programs must meet minimum accreditation requirements including a cultural competency component. *167 Champaneria and Axtell note that:

Cultural perceptions of illness have been reported to influence health-seeking behaviors, patient-physician communication, and health outcomes. Recent changes in US demographics have underscored the demand for cultural awareness in clinical settings, as the current minority population in the United States is projected to exceed 50% by 2056. The percentage of minority physicians and medical students, however, has not been increasing proportionately. Medical schools have responded in part with 2 broad strategies: cultural immersion programs and cultural competence curricula. The former typically include either a clinical rotation in another country or a more local experience with native communities. In 2002, 38% of US medical students participated in international electives, compared with 6% in 1982. By contrast, cultural competence curricula use case-based, small-group formats to explore the core cultural issues and health beliefs of various ethnic groups, complementary and alternative medicine, language barriers, substance abuse, racism, and cross-cultural interviewing skills. Such curricula also include role play, panel discussions with patient advocates and interpreters, and simulated encounters.

Focus should be drawn to the significance of contextualizing the cultural competence curricula in order to satisfy accreditation mandates. Medical accreditation standards can serve as a tool to ensure that undergraduate and graduate medical education addresses salient issues surrounding the intersection of gender and race in the Tuskegee Syphilis Study, specifically via cultural competence curriculum content. William C. McGaghie notes that, “[t]he sad history of medicine's contribution to the legacy of racism in America from ignoring slavery to exclusionary medical school admission policies to the Tuskegee syphilis study scandal and beyond [is well documented].

*168 Medical education's failure to teach about the biomedical significance of the Tuskegee Syphilis Study as it relates to the historical omission of women impacted by the study inherently impairs its ability to satisfy current cultural competence accreditation standards. The fact is, “[k]nowing the truth about our history will help to free us from the beliefs and attitudes about human differences that were deeply embedded in our culture with the invention of ‘race’ and ‘races.” ‘ The process of accreditation is designed to promote quality assurance in postsecondary education. It fosters institutional and program improvement. The improvement of medical education through cultural competency mandates the acknowledgement of “the point of view of women of color bodies and experiences with interfacing with the healthcare system of the past and present.”


A. Cultural Competence Accreditation Standards

The accreditation standards regulating medical education that are directly related to cultural competence both at the undergraduate and graduate levels are governed by the Liaison Committee on Medical Education (LCME) and Accreditation Council on Graduate Medical Education (ACGME), respectively. “Medical schools and graduate residency programs simply cannot operate if they fail to fulfill these minimum requirements.”


a. The LCME

The LCME is a body composed of the American Medical Association (AMA) and AAMC that judges medical schools, including their curricula, facilities, and faculty, against a set of public standards. It is responsible for the accreditation of medical schools in the U.S. and Canada.

*169 Two measurable accreditation standards that U.S. and Canadian medical schools must fulfill to stay in operation, which are directly related to cultural competence and the undergraduate medical education minimum standards, are as follows: ED-21. The faculty and students must demonstrate an understanding of the manner in which people of diverse cultures and belief systems perceive health and illness and respond to various symptoms, diseases, and treatments.

The LCME governing policy further explains ED-21:Instruction in the medical education program should stress the need for medical students to be concerned with the total medical needs of their patients and the effects that social and cultural circumstances have on patients' health. To demonstrate compliance with this standard, the medical education program should be able to document objectives relating to the development of skills in cultural competence, indicate the location in the curriculum where medical students are exposed to such material, and demonstrate the extent to which the objectives are being achieved.

ED-22. Medical students . . . must learn to recognize and appropriately address gender and cultural biases in themselves, in others, and in the process of health care delivery.

The LCME governing policy further explains ED-22:

The objectives for instruction in the medical education program should include medical student understanding of demographic influences on health care quality and effectiveness (e.g., racial and ethnic disparities in the diagnosis and treatment of diseases). The objectives should also address the need for self-awareness among medical students regarding any personal biases in their approach to health care delivery.

Additionally, the LCME's mandate to provide students with instruction in medical ethics is embodied in ED-23: “A medical education program *170 must include instruction in medical ethics and human values and require its medical students to exhibit scrupulous ethical principles in caring for patients and in relating to patients' families and to others involved in patient care.”

Pursuant to ED-23:The medical education program should ensure that medical students receive instruction in appropriate medical ethics, human values, and communication skills before engaging in patient care activities. As students take on increasingly more active roles in patient care during their progression through the curriculum, adherence to ethical principles should be observed, assessed, and reinforced through formal instructional efforts.

In medical student-patient interactions, there should be a means for identifying possible breaches of ethics in patient care, either through faculty or resident observation of the encounter, patient reporting, or some other appropriate method.

The phrase “scrupulous ethical principles” implies characteristics that include honesty, integrity, maintenance of confidentiality, and respect for patients, patients' families, other students, and other health professionals. The program's educational objectives may identify additional dimensions of ethical behavior to be exhibited in patient care settings.


b. The ACGME

The ACGME is the accrediting body responsible for the accreditation of post-MD medical training programs within the United States. The accreditation process is governed by established standards and guidelines. Pursuant to the ACGME's by-laws, its purposes “are to develop the most effective methods to evaluate graduate medical education, to promote the quality of graduate medical education, and to deal with such other matters relating to graduate medical education as are appropriate.”

In 1999, the ACGME endorsed competencies for all residents in the *171 following six (6) areas:

• Patient Care

• Medical Knowledge

• Practice-based Learning and Improvement

• Interpersonal and Communication Skills

• Professionalism

• Systems-based Practice

It is mandatory that all programs integrate the general competencies into the curriculum. McGaghie notes that “[a]ll graduate medical education programs must be responsive to measurable cultural competence issues in at least two of the six areas.” Pursuant to the ACGME's Common Program Requirements: General Competencies:

i. Interpersonal and Communication Skills:

Residents must demonstrate interpersonal and communication skills that result in the effective exchange of information and collaboration with patients, their families, and health professionals. Residents are expected to:• communicate effectively with patients, families, and the public, as appropriate, across a broad range of socioeconomic and cultural backgrounds;

• communicate effectively with physicians, other health professionals, and health related agencies;

• work effectively as a member or leader of a health care team or other professional group;

• act in a consultative role to other physicians and health professionals; and,

• maintain comprehensive, timely, and legible medical records, if applicable.

*172 ii. Professionalism:

Residents must demonstrate a commitment to carrying out professional responsibilities and an adherence to ethical principles. Residents are expected to demonstrate:• compassion, integrity, and respect for others;

• responsiveness to patient needs that supersedes self-interest;

• respect for patient privacy and autonomy;

• accountability to patients, society and the profession; and,

• sensitivity and responsiveness to a diverse patient population, including but not limited to diversity in gender, age, culture, race, religion, disabilities, and sexual orientation.

A major difference between undergraduate and graduate medical education is that the latter generally operates “under auspices of hospitals and academic medical centers affiliated with medical schools and is usually not managed by the schools themselves.”

“In graduate medical education, residents are both students and doctors,” thereby further promoting the need for a culturally competent medical education due to the direct physician- patient interaction and the promotion of trust for the healthcare system. Pursuant to the Report on Racial and Ethnic Disparities in Health Care, Updated 2010:

Evidence that cultural competency training can lead to improved patient outcomes and fewer liability claims exists, although more research is needed. To understand and treat racial and ethnic minorities better, physicians must engage in cultural competency training at all medical education levels. An increasing number of medical schools offer pathways to cultural competence development, but more needs to be done.

Both the undergraduate and graduate medical accreditation standards *173 relating to cultural competency are designed to ultimately address existing health care disparities.


III. Reproductive Justice Lens for a Transformative Remedy



When you [see] better, you [teach] better.”

Medical education should address the Tuskegee Syphilis Study's “blind spot” by also acknowledging the women who were directly impacted by the Study. Robby Reynolds, MPA, Director of MedEd PORTAL & CurrMit points out, “[m]edical schools need tools and resources beyond a curriculum management system in the areas of Evaluation, Curriculum Content Delivery and Scheduling.” The Tuskegee Syphilis Study's biomedical significance to women is not adequately addressed in medical schools. It is essential that a reproductive justice framework be implemented to assist in the development of culturally competent curricula, as it relates to the Tuskegee Syphilis Study's impact on women. A transformative remedy would acknowledge the problem relating to distrust of the public health care system amongst Black people generally, and Black *174 women specifically. There are several critical teaching tools for reexamining the Tuskegee Syphilis Study.


A. Reproductive Justice Lens

According to Bernadine Healy, M.D., former Director of the National Institutes of Health, “[b]eing different from men [has] meant being second-class and less than equal for most of recorded time and throughout most of the world. Adding to Healy's observation, a reproductive justice framework is needed to acknowledge yet another degree of “second-class” citizenry: when the difference occupies the body of a woman subordinated within “intersecting oppressions of race, class, gender, sexuality, and nation.” According to the SisterSong Women of Color Reproductive Justice Collective: Reproductive Justice is a base-building analysis that focuses on organizing women, girls and their communities to challenge structural power inequalities in a comprehensive and transformative process of empowerment. The Reproductive Justice analysis offers a compelling and more defensible framework for empowering women and girls and is relevant to every American family.

The utilization of a reproductive justice lens in medical schools to achieve cultural competency accreditation standards necessitates going beyond “asking the women question,” particularly when critically analyzing a facially neutral issue such as the selection of research subjects. The aspect of reproductive justice that challenges structural inequality would require one to reframe the “asking the woman question” to the “asking the woman *175 of color question,” so as to acknowledge gender, race, and class disparities in healthcare generally, as well as research specifically. Applying a reproductive justice framework to the recounting of the Tuskegee Syphilis Study - historically as well contemporarily - calls for a critique of women and research.

Vanessa Merton argues:

For too long, gender has substituted for more precise biological attributes to achieve and illusory “homogeneity” that serves certain research goals at the expense of others. From a \ woman's point of view, this model of research has not been more efficient. Efficiency requires definition of a desired endpoint and assessment of the extent of its achievement. For women, the desired endpoint of biomedical research- knowledge useable by and useful for the entire universe of people, including the pregnant and potentially pregnant woman- had not been achieved to any satisfactory degree.

Exploring the “asking the woman of color question” when examining the Tuskegee Syphilis Study yields great insight into present day omissions of research involving women. According to the reports from the initial meetings on framing the protocol for the Tuskegee Syphilis Study, females were not selected “because it [would be] next to impossible to get reliable information as to the date of infection of syphilis in the female.” Simply put, the women were excluded from the purported “research” by virtue of their different physiological makeup, although both women and children were included as participants in the earlier Rosenwald Demonstrations. The truth of the matter conceivably lies in the decision to take advantage of the Rosenwald Demonstrations' goodwill to secure participants for a study on the effects on untreated syphilis, while misleading them to believe that they were in fact receiving treatment. Gray points out that “[f]ield hands *176 and manual workers were sought out by Vonderleher so that he would not have to waste his Wasserman [sic] tests on women.” The Wassermann test, generally speaking, refers to a series of blood tests that the government doctors administered to diagnose syphilis and assess its progress.

To date, “[b]iomedical research has concentrated on the investigation of health problems as they affect men - not surprisingly, largely explored in male research subjects. Until quite recently, bioethical analysis has failed to recognize and analyze the ethical issues inherent in this situation.” The inclination to overlook women in research is necessary to maintain a status quo of “second-class cititzenry” healthcare, thereby resulting in unethical conduct. Even in light of “[s]candals such as the Tuskegee Syphilis Trials [which] motivated efforts to protect research subjects by excluding them from research” based upon a lack of informed consent, the current discourse on the Tuskegee Syphilis Study fails to “ask the women of color question” and its implications for women and research today. As Merton points out, “[a]lmost nowhere in the massive bioethical literature on experimentation is there any reference to a right to be considered for a research protocol, or to a corresponding duty to avoid unjustly or irrationally excluding those who might wish to be subjects.”

The omission of women from the protocol in the Tuskegee Syphilis Study in 1932 foreshadows the medical “her-story” of marginalization that currently exists. It has been argued that “medical and other health care practices should be reviewed not just with regard to their effects on the patients who are directly involved but also with respect to the patterns of discrimination, exploitation, and dominance that surround them.” This is especially true in the Tuskegee Syphilis Study, due to the known effects of the disease, which can be acquired through sexual activity or congenitally from an infected mother.

A reproductive justice lens will allow one to acknowledge the *177 biomedical significance of the Tuskegee Syphilis Study to current issues of omitting women in research protocols. According to Lorretta Ross, National Coordinator, SisterSong Women of Color Reproductive Health Collective, the development of the term “Reproductive Justice” evolved from a definition of:“reproductive health integrated into social justice.” Reproductive justice, at that time, was defined as “reproductive health integrated into social justice.” Reproductive justice was further developed as an intersectional theory emerging from the experiences of women of color whose communities experience reproductive oppression. It is based on the understanding that the impact on women of color of race, class and gender are not additive but integrative, producing this paradigm of intersectionality. The concept of reproductive justice was further elaborated in a seminal paper written by Asian Communities for Reproductive Justice in 2005. ACRJ strengthened the Reproductive Justice analysis by analyzing the three main frameworks for fighting reproductive oppression: 1) Reproductive Health which deals with service delivery, 2) Reproductive Rights which address the legal regime, and 3) Reproductive Justice which focuses on movement building.

By applying a reproductive justice lens to a reexamination of the Tuskegee Syphilis Study, one ascertains that the government denied the women directly impacted by the study the right to not bear a child with congenital syphilis, because of the government doctors' intention to study the effect of untreated syphilis on men (the husbands and intimate partners of the women who contracted syphilis) and, unbeknownst to them, passed the disease on to their unborn children.

The reproductive justice lens lays the foundation for a transformative remedy to address African American distrust of the public health care system. The transformative nature of medicine and provision of medical services will be manifested when medical schools reframe the discussion of the women affected by the Tuskegee Syphilis Study as mere collateral consequences to the center of discourse when teaching the biomedical significance of women. By de-marginalizing the presence and narrative of women of color in medical research, medical schools will meet their *178 mandates of incorporating a culturally competent curriculum, which will undoubtedly transform the field of medicine, medical research, and the provision of medical services.



B. Transformative Remedy

In order to fully appreciate the necessity of a transformative remedy, one must first recognize a form of injustice. Arguably, the accreditation mandates for cultural competence in medical education, continued discussions, and generated research amongst medical and legal professionals in or concerned with the healthcare field, are indicative of efforts to acknowledge existing injustices manifested by disparities in health care. A transformative remedy can be implemented to address medical education's cultural competence accreditation standards, by exploring the roots of the most infamous government initiated biomedical ethical abuse in U.S. medical history with a reproductive justice lens.

The notion of a “transformative remedy” should be explored from Nancy Fraser's working definition, wherein she compares alternative remedies of injustice by distinguishing between “affirmative remedies” and “transformative remedies.” Fraser explains that affirmative remedies target end-state outcomes and transformative remedies address root causes. The historical and present day omission of the biomedical significance of the Tuskegee Syphilis Study to women and research calls for a just remedy. To achieve this result, one must examine both traditionally-exposed root causes, as well as historically-unexposed root causes for the negative aftermath of the Tuskegee Syphilis Study.



C. Tuskegee Syphilis Study and Distrust: Root Causes In Context

As Professor Vernelia Randall explains, “fear and distrust of the health care system is a natural and logical response to the history of experimentation and abuse. The fear and distrust shape our lives and, consequently, our perspectives.” It is critical to examine the root causes for the existence of distrust amongst African Americans and the public *179 health care system. The Tuskegee Syphilis Study is oftentimes the most cited reason for such distrust. Although the Tuskegee Syphilis Study is framed as the longest government initiated ethical abuse meted against Blacks, one cannot overlook the legacy of U.S. Slavery and the legal fiction of chattel property that allowed people of African descent to be bought, sold, and used for medical experimentation. Within the historical context, the Tuskegee Syphilis Study is one incidence that perhaps further solidified the level of distrust amongst Blacks and the healthcare system, but certainly it is not the sole reason. It is perhaps the depth of the misleading nature of a government sanctioned medical experiment during modern times that is most bothersome to some. Faden and Beauchamp note as amongst the egregious facts regarding the Tuskegee Syphilis Study:

These subjects knew neither the name nor the nature of their disease. That they were participants in a non-therapeutic experiment also went undisclosed. They were informed only that they were receiving free treatment for “bad blood,” a term local blacks associated with a host of unrelated ailments, but which the white physicians allegedly assumed was a local euphemism for syphilis. No attempt was made to explain what “bad blood” meant, presumably because the physicians believed that the subjects were incapable of comprehending any complex explanation. The investigators assumed that the subjects would comply without question; their deference to authority and desire to receive medical attention made them *180 readily available subjects. The subjects were also misinformed that research procedures such as painful spinal taps were a “special free treatment,” a patently false statement. As historians James Jones and David Rothman have both argued, theirs was a “manipulated consent”, extracted from subjects in such “social deprivation” that manipulation came effortlessly.

This type of callousness and disregard for humanity engenders a well-founded predisposition within the African American community to distrust public health initiatives, which should be emphasized when teaching the Tuskegee Syphilis Study. The recognition of a present day shadow of distrust that lingers over the healthcare system and its interactions with people of color generally, and Black people specifically, arguably served as an impetus to campaign for a Presidential Apology for the Tuskegee Syphilis Study. President William Clinton stated in the presence of surviving participants and their families:

No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.

The 1997 Presidential apology was significant, but ultimately insufficient to quiet Black distrust of the healthcare system and the inclination to link the Tuskegee Syphilis Study as support for reluctance to participate in clinical research trials, such as HIV/AIDS prevention and treatment *181 programs. Gamble notes that “[t]he syphilis study has also been used to explain why many African Americans oppose needle exchange programs.” The reasons for the present day distrust are no less valid in the collective memory of Black people than any opposing views of its absurdity. However, a critical examination of the historical relationship between Blacks and the health care system reveals that the Tuskegee Syphilis Study must be viewed within a broader historical and social context. Moreover, utilizing a reproductive justice lens enhances the understanding of the general attitudes about medical research held by African Americans, as well as a means to address them.



D. Tuskegee Syphilis Study and Distrust Amongst African American Women: Traditionally Unexposed Root Causes


The life experiences of Black women and health care often present intersecting issues involving reproductive health. The Black woman's particularized experience is traditionally marginalized, but nonetheless deeply seeded in distrust, which is both historically based and existent in contemporary instances of medical research. A historical account of the Black woman being “studied” is the ‘her-story’ of Saartjie Baartman, a Black South African Khoi-San woman often referred to as the “Hottentot Venus.” George Cuvier, known as the “Father of Paleontology and Comparative Anatomy,” dissected her body at an autopsy and published his “scientific findings:” a “document [of] monkey-like” racial differences that fortified beliefs of Black inferiority for more than a century. Another historical her-story occurred at the hands of Dr. J. Marion Sims, who was known as the “Father of Gynecology;” Dr. Sims appropriated the Black woman's body as a reservoir for scientific knowledge in order to discover a cure for “vesico-vaginal fistula,” a medical condition involving internal *182 tears in the vaginal wall leading to urinary and sometimes fetal incontinence, most often caused during traumatic childbirth. The ‘her-story’ of Anarcha, Betsey, Lucy and other un-named enslaved Black women lay at the intersection of race, gender, and reproductive health, resulting in the development of the specialty of gynecology in the United States. As to the Tuskegee Syphilis Study and distrust amongst Black women, a reproductive justice lens would bring to focus the inherent structural inequality of the selective construction of Black women's bodies at the behest of scientific goals, whether “raced” or “gendered” depending on the end-state outcome - or as Fraser refers to it, the “affirmative remedy.”

For instance, Cuvier's dissection of Saartjie Baartman's “raced” body ultimately resulted in findings which supplied the “scientific” affirmation of the natural inferiority of Blacks. In comparison, Sims' unanesthesized experiments on the “gendered” bodies of Anarcha, Betsey, and Lucy ultimately resulted in medical technologies and surgical instruments that benefited all women, both then and now.. However, the Tuskegee Syphilis Study reflects the selectivity of white governmental doctors' decisions to exclude all females in the research protocol with respect to a venereal disease that impacted both males and females. Even though race situated the Tuskegee women in the so-called “notoriously syphilis soaked race,” her gender deemed her an “unworthy” human subject. A reproductive justice lens clarifies the reality that Nurse Rivers was “powerless to advocate for the wives of the men [in the study] who asked why only men could be in the study.” “‘We're sick too, Nurse Rivers,”’ they said.” It is the axis of historical and social context that accounts for feelings of distrust among African American women and the healthcare system; and this axis makes structural inequality evident. Recent research indicates that:

Distrust of the white dominated medical community either because of Tuskegee or the long history of the subordination of black people in [a given] community at the hands of whites, *183 obviously plays some role in the reluctance of blacks to participate in clinical research. In the black community suspicions linger about the real goals of medical research-especially when the research involves genetic screening.

Even though the poor representation of Black women in medically oriented research is well-documented, the reasons for the low participation do not solely rely on the exploitation and abuse of the Tuskegee Syphilis Study. In order to locate equitable research, a reproductive justice lens would train one to “make research participation more meaningful to people from differing backgrounds and improve research methodologies to be inclusive for all segments of the population.” The utilization of a reproductive justice lens will aid in the establishment of a transformative remedy to teach about the impact of the Tuskegee Syphilis Study, by addressing both traditionally exposed and unexposed roots of injustice concerning Black women and research.



IV. Recommendation for Culturally Competent Curricula Delivery: The Tuskegee Syphilis Study

Medical education's culturally competent accreditation standards present a need for curricular content delivery. The Agency for Healthcare Research and Quality notes that “[c]ultural competency training can be achieved by infusion, integrating a multicultural perspective throughout curriculum or training activities.” This idea of infusion of perspectives *184 into the medical curriculum is echoed in Professor Margaret Montoya's call for the “[t]he fusion of [Critical Race Feminist Theory] CRF from law schools with linguistic and cultural competence from medical schools.” This Article contends that CRF offers critical teaching tools necessary to enhance culturally competent curricular content for medical schools. The focus of this section is to provide an example of “CRF Teaching Points,” particularly as to the use of deconstructive techniques and narratives. Part A will introduce critical teaching tools. Part B will demonstrate deconstructive techniques to teach about the Tuskegee Syphilis Study through the contemporary lens of the HBO movie, Miss Evers Boys. Part C will explore the use of narrative by examining “her-story,” the unique and particularized experiences of Black women which would otherwise be marginalized. “Scientific investigators had to learn that ‘moral judgment should always be a part of any human endeavor,’ including ‘the dispassionate scientific search for knowledge.’ Accordingly, medical students should learn this invaluable lesson as a part of the mandate for a culturally competent education. This final section examines critical teaching tools to recount the Tuskegee Syphilis Study and its biomedical significance on women and research, in order to begin to assist medical schools in their mandate to demonstrate minimum proficiency in the area of cultural competency for purposes of accreditation.


A. Critical Teaching Tools for the Infusion of CRF into Medical School Curriculum


The infusion of CRF theory as a means to ensure cultural competent curricular in medical schools has been advanced. “[C]ritical race feminists provide the tools for challenging subordination at its core and understanding how various oppressions are connected and interrelated - setting the stage for truly transformative change in our society.” This *185 section will examine basic tenets of CRF theory and their effectiveness toward assisting medical schools to satisfy culturally competent mandatory accreditation standards. CRF traditionally “draws from critical legal studies the idea of deconstruction along with the critical analysis of the traditional legal canon.” J.M. Balkin argues that:

Lawyers should be interested in deconstructive techniques for at least three reasons. First, deconstruction provides a method for critiquing existing legal doctrines; in particular, a deconstructive reading can show how arguments offered to support a particular rule undermine themselves, and instead, support an opposite rule. Second, deconstructive techniques can show how doctrinal arguments are informed by and disguise ideological thinking. This can be of value not only to the lawyer who seeks to reform existing institutions, but also to the legal philosopher and the legal historian. Third, deconstructive techniques offer both a new kind of interpretive strategy and a critique of conventional interpretations of legal texts.

I contend that medical school curricula will move toward satisfying cultural competence mandates through critical teaching tools, such as deconstructive techniques as employed by CRF theory. Professor Adrien Wing asserts that critical race feminism draws from critical legal studies the idea of deconstruction along with the critical analysis of the traditional legal canon.

An example of deconstructive inquiry can be gleaned from some key Critical Race Theory or CRF components set forth by Margaret Montoya:a. The role that science has played and continues to play in constructing racial identities, and the concepts we understand as “race” or “racialized ethnicities.”

b. How law has created and sustained white supremacy.

*186 c. How law creates and maintains race-based power imbalances.

d. How law intersects with the collective racial histories of the respective racialized groups in the U.S.

e. Why social burdens or benefits accrue because of race.

f. Why narratives are used to express and examine racial identities.

g. Why legal discrimination needs the concept of intersectionality, (i.e., the interlocking oppressions affecting women, such as racism, sexism, heteropatriarchy, classism, agism, etc.).

The fusion of the delineated inquiries into medical education would prove beneficial for addressing the need for culturally competent curricula. Montoya correctly points to the propensity of medical schools to “rarely name or analyze” race in terms of its socially constructed nature and resulting social inequalities.

Montoya notes innovative efforts by medical schools to address cultural competence and its shortcomings:[I]n the Videotape: Worlds Apart: A Four-Part Series on Cross-Cultural Healthcare produced by Stanford University Center for Biomedical Ethics (2003) wherein the narrator, Robert Phillips ‘makes a passing reference to the Tuskegee experiments' to explain the distrust that many African Americans have of doctors and the health profession. . . [accompanied by] a one sentence slide that purports to explain to the Stanford medical students what the Tuskegee experiments were.

A critical examination of the Tuskegee Syphilis Study is necessary in order to adequately make a deconstructive inquiry into its biomedical significance to women and research. Champion notes an example of using the Tuskegee Syphilis Study as a means to illicit discussion on professional responsibility in informed consent and scientific experimentation issues amongst college students enrolled in a physical therapy education course:The Syphilis study was used as a teaching example - it should *187 be noted that none of the students were familiar with the study. The six-hour instructional unit included 1) in class viewing of the video, Miss Evers Boys, 2) individual student completion of a “Probing Question Guide” to define ethical dilemmas and consider value conflicts, and 3) focused discussion about issues such as medical paternalism, autonomy, informed consent, honesty, “whistle-blowing”, and the conflict between scientific inquiry and patient rights; as complicated by role definition and responsibility within the health care system. . . . 64 of the 68 students (95%) reported that this instructional approach was more satisfying than traditional formats used in applied ethics. Specific outcomes of this experience were described in terms such as “. . .brought theory to life in the classroom”, “now understanding the underlying value of valid informed consent”, “will not soon forget this violation of human dignity and its impact”, and” . . . learning from the experience of others helps me to clarify the issues.” At the conclusion of the unit, 100% of the students requested additional time for further discussion.

The reality that none of the students were familiar with the Tuskegee Syphilis Study prior to the viewing of the 1997 HBO movie, Miss Evers Boys, is especially disturbing because the “facts” of the study are now skewed by a fictional account of a significant human atrocity in U.S. medical history that marginalizes the women of the Tuskegee Study directly impacted by the effects of untreated syphilis. It is the “rarely named or analyzed” prevailing issues that CRF cast light upon in order to promote a curricular delivery that meets the current medical accreditation cultural competency standards.


B. Miss Evers Boys and the Tuskegee Syphilis Study

The 2003 Institute of Medicine (IOM) Report, Unequal Treatment, documented the depth of racial and ethnic disparities in U.S. healthcare, using a variety of outcome and process measures. Medical education through the advancement of culturally competent curriculum has the opportunity to address the existing gap in U.S. healthcare among racial and *188 ethnic populations. This can be accomplished by shaping an “ethical conscience” infused with CRF theory. Professor Patricia A. King notes that the “social and ethical issues that the [Tuskegee] experiment poses for medicine, particularly for medicine's relationship with African Americans, are still not broadly understood, appreciated, or even remembered.” CRF has the potential to close the gap of racial and ethnic disparities through the application of a transformative remedy that utilizes a reproductive justice framework under the auspice of medical education. Cinemeducation provides a venue to use film as part of the classroom curriculum to “promote enthusiasm for learning, highlight themes, enhance discussion and reflection, and sometimes, help illustrate specific teaching points on clinical topics, social and health care policy issues, cultural differences, and science.” However, the showing of a film to teach or integrate medical ethics does not replace “thoughtful reading and analysis of essential texts.”

A CRF lens would allow one to see the HBO movie, Miss Evers Boys, erroneous act of imputing power and privilege to Eunice Rivers, the sole Black nurse involved against the U.S government sponsored PHS study of untreated syphilis on unsuspecting Black males. Public misconceptions about the Tuskegee Syphilis Study are not only prominent in the media, [but can] “carry serious implications for attitudinal and behavioural outcomes related to the healthcare of African Americans.” Miss Evers Boys is a “widely popular interpretation of the events of the study.” Dula *189 correctly points out that “the film actually opens a broader discussion regarding many ethical concerns.” The fictional account of Miss Evers Boys will become “fact” unbeknownst to the viewer/student if not explored critically in curricular delivery to teach about the Tuskegee Syphilis Study. There is a deconstructive approach to critically examine some aspects of the movie, in both historical and fictional contexts. Ironically, the “dramatizations of the Study. . .focused in large measure on the role of the woman who worked with the participants for practically its entire duration.” However, in fact, the 1973 lawsuit (amended on August 1, 1974) filed by Attorney Fred Gray on behalf of four categories of plaintiffs (living syphilitics, living controls, personal representatives of the estates of deceased syphilitics, and personal representatives of the estates of deceased controls) did not include Nurse Rivers or the Tuskegee Institute as defendants in the case. Gray reasoned that:

Miss Rivers was powerless to have either begun, continued, or stopped the program. She worked in an environment where all of her superiors were white, while she worked directly with African American men. Even after penicillin became available, Nurse Rivers had no voice as to whether or not [the] men would be given penicillin.

*190 Gray noted that during the beginning era of the experiment in the 1930s, the Tuskegee Institute was an African American educational institution struggling to survive, and its cooperation was being sought by the federal government; It began as an outgrowth of the Rosenwald Fund survey, and was financially backed by Tuskegee Institutes' significant benefactor. “[Gray] felt the same about the Tuskegee Institute as [he] did about Nurse Rivers - that the Institute and its officials were misled, betrayed, and taken advantage of [by the federal government].” The surviving Tuskegee Study participants' objections to Miss Evers Boys lay the foundation for a deconstructive inquiry setting forth “CRF Critical Teaching Points,” which ultimately address how law intersects with the collective racial histories of the racialized groups in the U.S. “The entire film shifts the responsibility for the Study from the federal government to an African American doctor and an African American nurse. [The] Study was conceived, financed, executed, and administered by the federal government. The African American medical professionals who participated in it were victims as were the 623 African American participants.” As to the role of Nurse Rivers in the Tuskegee Syphilis study, inasmuch that it is erroneously depicted in Miss Evers Boys or a fictionalized account, it should be noted that the oft-cited historical account of the study, Bad Blood, by James H. Jones, “devotes a major portion of [the book] to describing Nurse Rivers' work and the trusting relationships she established with the men in the study.” Hammonds argues that:

[Jones] spends far too little time documenting [Nurse Rivers] relationship with the black and white male physicians who supervised her. Castigating [Nurse Rivers] for “ethical *191 passivity,” Jones seems almost personally aggrieved that Nurse Rivers was unable to stop the experiment. [Jones] does not call to account the male physicians who had much more power and authority than she. Thus, in [Jones'] rendering of [“a historical account” - added by author] the story, the black woman nurse becomes the center of the ethical dilemmas raised by the Tuskegee Study. The person who in fact had the least amount of power to resist or question the study is blamed.

As Susan M. Reverby puts it, “Tuskegee's symbolic importance makes it culturally difficult, however, to consider the seeming ‘facts' of the study alone. Especially after the 1997 presidential apology, media and cultural attention have refocused on Tuskegee and its racial assumptions and made the facts still more elusive.” It is an inherent goal of CRF Teaching Points to allow students to critically analyze the elusive and obvious facts, in order to derive a conclusion that ultimately seeks to right historical and present day wrongs by providing culturally competent curricula. As to the Tuskegee Syphilis Study and its biomedical significance in U.S. medical history, Herman Shaw, the 95-year-old survivor who attended the White House Presidential apology sums it up best: “We were treated unfairly. To some extent like guinea pigs. We were not pigs. We were hard working men, not boys and citizens of the United States.” CRF has the potential to enhance medical educations' goal of satisfying cultural competence accreditation standards by applying a reproductive justice *192 framework.


C. The Her-Story of the Women of the Tuskegee Syphilis Study

CRF theory embodies “[t]he use of narrative, chronicles, and storytelling. . . among the tools often used by CRF theorists.” Professor Montoya asserts that “[d]efining the voices of CRF means forming allies in the task of dismantling the barriers of race and gender and having those allies take CRF concepts and use them so that they mean something real for women of color themselves, our local communities, and future generations.” One must explore the CRF Critical Teaching Point of the use of narrative to acknowledge the existence of the women who were directly impacted by the Tuskegee Syphilis Study, but who were marginalized during the study in 1932 and in its present day recounting. According to Critical Race Feminist Scholar, Adrien K. Wing, “narratives aid in exposing the reality of racism and validate the experiences of people of color.” As a critical teaching tool, “[t]he lens of CRF compels the storyteller [“teacher” ] to not only speak about “unspeakable” things, such as notions of race and racial construction, gender, and locations of power in the health care system - it also encourages the story listener [“student” ] to hear the silence of issues raised but not adequately addressed.” The fact *193 that history marginalizes or silences the particular experience of the women directly impacted in the Tuskegee Syphilis Study can be explored by extracting the “narrative behind the narrative,” a concept which challenges the world view of the historically accepted narrative by offering exposure to alternate social realities. The historically accepted narrative of the Tuskegee Syphilis Study generally focuses upon the government initiated untreated syphilis study on Black males from 1932-1972. An alternate social reality centers on the fact that syphilis is a sexually transmitted disease that was unwittingly passed on to the wives and partners of the men in the study who were not selected as research subjects based upon their gender. This narrative behind the narrative sheds light on the autonomy (or lack thereof) of the women directly impacted as wives, as well as the presumed illegitimacy of relationships outside of the legal category of marriage.

It was not until 1975 that the wives, widows, and offspring were added to the Tuskegee Health Benefit Program, which granted lifetime medical benefits and burial services to all living participants pursuant to the out-of-court settlement filed on behalf of the study participants and their families in 1973. Therefore, Black women who were married to the male participants were not deemed worthy of treatment nor did they fit the all black male research protocol during the study's 40-year span. Likewise, the women directly impacted but not married to the male participants of the Study, and the children manifesting congenital syphilis but borne out of wedlock, were not recognized and thus did not receive a remedy for the harm resulting from the governmental experiment. Professor Martha Fineman states that “[i]n a diverse and secular society, it is impermissible for the state to privilege one form of sexual affiliation over others, and thus to make marriage the core connection in the institution of the family. By exploring the narrative behind the narrative of the women directly impacted by the Tuskegee Syphilis Study and deconstructing the notion of *194 marriage and its presumed benefits, one can ultimately address why legal discrimination needs the concept of intersectionality (i.e. the interlocking oppressions affecting women, such as racism, sexism, heteropatriarchy, classism, agism, etc.) in order to serve as a CRF Critical Teaching Point.

Law and society have created and maintained a lack of space with regard to the Black women directly affected by the Tuskegee Syphilis Study. Law and society created constructs of “legitimate and illegitimate sexualities” expressed by Black women, as well as a normative standard concerning sexuality and marriage. There exists a narrative worth critically examining as to the different tropes of Black women that were affected by the Study, who have been similarly and dissimilarly marginalized in historical and contemporary discussion due to socio-legal constructs of “legitimate and illegitimate sexualities.” Holloway posits that “[i]t is certainly true that the field of bioethics might benefit from increased exposure to the categories of stories, theories of analysis, and the study of genre.” Specifically, there is a notion of married Black women embodying a “constructive presence” within law and society via their husbands, and single Black women embodying an “invisible presence” because of their lack of a husband. The interaction of law and society has made single, Black women essentially invisible to the point that the framing of their rights has either been severely limited, completely denied, or simply unacknowledged. Conversely, the interaction of law and society has made Black married women constructively present via their husbands. The Tuskegee Syphilis Study warrants a critical examination of the different life experiences of marginalization, even amongst Black women, based on marital status and presumptions of legitimacy (or the lack thereof). Thus, there exists a real need to critique the rights and remedies accrued or denied to Black women because of intersecting or multiple identities stemming from their race, gender, and marital status, both historically and presently.

Medical schools benefit from the integration of CRF theory into their curricula. The utilization of a transformative remedy that focuses on the *195 root causes for the historical and current omission of the women directly impacted by the Tuskegee Syphilis Study is enhanced through CRF Critical Teaching Points which advocate the use of deconstructive techniques and narrative.


 CONCLUSION

Current discourse will at times admit that the Tuskegee Syphilis Study exploited Blacks as living subjects for purposes of “scientific advancement” to ultimately prove race based differences. This was a historical tragedy that laid the foundation for mandates on conducting research on human subjects. However, an overlooked extension of the aforementioned historical tragedy is the ‘her-story’ of the Black women of Tuskegee who were directly impacted by the study. Medical education currently recounts the most noted biomedical research study on human subjects, but without critically examining the marginalization of the Black women directly impacted. These women were not only worthy of being acknowledged then, but are worthy today of acknowledgement during recounts of the Tuskegee Syphilis Study. A transformative remedy that utilizes a reproductive justice framework would address the biomedical significance of women and research in the Tuskegee Syphilis Study. The implementation of culturally competent curricular content delivery that satisfies medical education accreditation standards as to the teaching of the Tuskegee Syphilis study would serve as a necessary step toward addressing race, gender, and research disparities in the healthcare field. Thus, a culturally competent curriculum could assist in the attainment of reproductive justice and lead to an increased trust of public health initiatives within the African American community.


 

Associate Professor of Law, Florida A&M University College of Law, J.D., Southern University Law Center; LL.M, Georgetown University Law Center.

Medication Information for Patients with Limited English Proficiency: Lessons from the European Union

Marsha Regenstein, et. al.

Marsha Regenstein, Ellie Andres, Dylan Nelson, Stephanie David, Ruth Lopert and Richard Katz, Medication Information for Patients with Limited English Proficiency: Lessons from the European Union, 40 Journal of Law, Medicine & Ethics 1025 (Winter 2012) (66 Footnotes)



Access to clear and concise medication information is essential to support safe and effective use of prescription drugs. Patient misunderstanding of medication information is a common reason for non-adherence to medication regimens and a leading cause of outpatient medication errors and adverse drug events in the U.S. Medication errors are the most common source of risk to patient safety, leading to poor health outcomes, hospitalizations, and deaths. Over half a million adverse drug events occur in the outpatient setting each year at a cost of approximately $1 billion annually.

Nearly half of adults in the U.S. experience difficulty understanding and acting upon health information. Even individuals with high levels of general literacy may find medication information difficult to understand or use. The risk of misunderstanding medication information is compounded for patients with limited English proficiency (LEP) who may not have access to this information in their own language. Several studies underscore the particular challenges that misunderstanding of medication information creates for patients with LEP and demonstrate that language barriers may be a significant cause of medication errors. Examples of patients with LEP who have experienced medication errors as a result of language barriers abound, such as the common and treacherous example of “once daily” in English being easily confused with “eleven times” in Spanish.

Given the high incidence, significant risks, and substantial costs of medication errors, the Institute of Medicine has dedicated considerable attention to the issue as a quality concern. For medicines to be effective, patients must understand and comply with dosage, timing, and other instructions--an expectation that cannot be met if the necessary information is not understandable to the patient. Likewise, the safe use of medicines requires patients to understand information about side effects, warnings, contraindications, and interactions with other medications or foods. For reasons of equity, the language spoken by the patient should not serve as a barrier to accessible and accurate medication information.

In its 2006 report, Preventing Medication Errors, the Institute of Medicine drew attention to the issue of language barriers related to medication information and offered recommendations for improvements, including necessary accommodations for patients with LEP, such as translations of prescription labels and information leaflets. Similarly the Joint Commission, the National Quality Forum, and the National Committee on Quality Assurance each have standards that include broad requirements or recommendations for translating essential documents.

The United States lags behind the European Union (E.U.) in terms of practices related to the delivery of medication information in multiple languages. Since 1995, the centralized drug approval procedure in the E.U. has required pharmaceutical manufacturers to make medication information available in the official languages of E.U. member states. U.S. regulatory frameworks do not impose any obligations regarding the translation of medication information into multiple languages, and consequently, this information is rarely available in the U.S. in languages other than English.

This paper describes regulations and practices related to the delivery of medication information to U.S. consumers, and examines practices in the E.U. that may serve as a model for future U.S. policy efforts to improve the quality and availability of medication information for individuals with limited English proficiency.



The Need for Medication Information in the Patient's Language

More than one in five people living in the U.S. speak a language other than English at home. A large and growing group of individuals, numbering more than 25 million in 2011, have LEP and consequently face enormous challenges when communicating with health professionals about medication use. Compared to English-speaking individuals, persons with LEP are more likely to experience medication errors and less likely to understand medication and dosing information or adhere to recommended medication regimens.

Title VI of the Civil Rights Act of 1964, which prohibits discrimination based on national origin, has been widely interpreted as prohibiting discrimination against LEP persons. Entities receiving federal funding, including pharmacies, must provide meaningful access to individuals with LEP. In addition, all states have laws supporting the provision of language services during patient counseling, the distribution of written information, or both. However, oversight of the health care industry's compliance with these rules is extremely limited; federal regulation related to medication information does not require pharmacies or pharmaceutical companies to make such information available in any language other than English.

Unfortunately, medication information from pharmaceutical manufacturers is rarely available in languages other than English. Also, despite poor outcomes associated with misunderstanding medication information, few pharmacies translate prescription instructions, print non-English prescription labels, prepare non-English information packets, or communicate with consumers in languages other than English. Many pharmacies lack access to translation software, telephone interpretation services, or appropriately skilled personnel with fluency in other languages. While chain pharmacies and pharmacies with large LEP patient populations are more likely to have some capacity to translate prescription labels either verbally or in print, researchers have found that translation practices are often inconsistent and potentially hazardous, risking perpetuating health disparities among LEP patients.


Medication Information in the U.S.

In the U.S., there are a number of ways by which medication information is presented and distributed to patients. When filling prescriptions at a pharmacy, individuals may receive four types of patient medication information: the prescription container label, medication guide, package insert, and consumer medication information (see Table 1 omitted).

Prescription Container Labels

The prescription container label is the primary source of medication information used by patients because it is affixed to the medication container and is therefore less likely to be disposed of or lost. All states have laws regulating container labels. Most state provisions mirror federal Food and Drug Administration (FDA) standards for the content of container labels and require that the label include the name of the drug, patient, physician and pharmacy, as well as the “Rx number” and refill status. The label also contains dosing and administration instructions as provided by the patient's physician, as well as auxiliary warning statements, often presented in a variety of colors with different pictures (e.g., may cause drowsiness; avoid alcohol while taking this medication).

Efforts to ensure language access related to prescription drugs tend to target the prescription container label generated by the pharmacy. In September 2009, New York City became the first locality in the U.S. to require translation services in certain pharmacies. Among other requirements, New York City's law mandates translation of container labels into the top seven languages spoken by LEP persons in the city. New York City's statute followed a civil rights complaint brought against several chain pharmacies in New York State. As part of the settlement, the chain stores involved were required to translate prescription labels into eleven languages by May 2010. On March 30, 2012, New York State approved legislation essentially expanding the New York City translation requirement to benefit individuals with LEP throughout the state. Additionally, recent legislation in California requires the Board of Pharmacy to publish translations of prescription label instructions in at least five languages other than English on its website, in order to facilitate the use of translations in California pharmacies.

Medication Guides

In 1998, the FDA issued regulations requiring drug manufacturers to provide consumers with medication guides (Med Guides), 1-2 page paper handouts for a limited number of drugs that the FDA considers to “pose a serious and significant public health concern.” The guides are currently available for approximately 250 different drugs and are intended to help patients avoid serious adverse events. Med Guides are developed by the pharmaceutical manufacturer and are subject to FDA approval. A 2008 evaluation of medication information commissioned by the FDA found that very few patients received Med Guides and many pharmacies were not aware of their responsibility to provide them to patients.

While the FDA requires that Med Guides be written in English, in non-technical, understandable language without promotional tone or content, it does not require them to be translated into languages other than English. At the time the regulation was issued, the FDA acknowledged public concerns about the availability of Med Guides in Spanish and other languages and encouraged manufacturers to develop Med Guides in languages other than English. However, translated Med Guides are not subject to FDA approval and the agency has asserted that it will not review versions of labeling in languages other than English, whether as part of a new or supplemental drug application.

Patient Package Inserts

In addition to medication guides, the FDA also maintains regulatory oversight for consumer-directed information for oral contraceptives and certain products containing estrogens. This information is in the form of a patient package insert (PPI), typically presented as a folded leaflet inside the unit-of-use packaging. Each PPI is developed by the drug's manufacturer, who may also voluntarily provide PPIs for other types of drugs. Although PPI regulations do not specifically state whether the information must appear in English or any other language, it is presumed to be required in English since the information is necessary for FDA approval.

Consumer Medication Information

Consumer medication information (CMI) includes information on the medication's purpose, indications and contraindications, side effects, and warnings; it is often stapled to the outside or placed inside the pharmacy-provided prescription bag. Although pharmacies are not required to provide CMI to consumers, most do so voluntarily, providing information that they either develop internally or purchase through third-party vendors. Pharmacy practices vary, with some pharmacies providing CMI documents only for new prescriptions and others including them routinely with all prescription medications. Unlike Med Guides and Patient Package Inserts, CMI documents are not reviewed, approved or regulated by the FDA.

Over the past two decades, the value of the CMI as a patient education tool has been called into question, in part because of variability in the quality of the information and lack of clear standards and regulatory oversight governing CMI content and availability. Nevertheless, CMI is one of few sources of medication information in the U.S. that has included some limited discussion of availability in languages other than English.


The European Union: Translation of Medication Information

The E.U. takes a far different approach than the U.S. when it comes to the translation of medication information. The E.U. has incorporated the translation of medication information into its centralized drug approval procedure, requiring translated medication information targeted to consumers in the official languages of the E.U. member states.

In 1995, the E.U. established the European Medicines Evaluation Agency and with it, an opportunity for the pharmaceutical industry to consolidate the drug approval process across E.U. member states. The agency, now known as the European Medicines Agency (EMA), is responsible for evaluating drug approval applications, post-market monitoring and pharmacovigilance, and providing scientific advice to companies developing new drugs. Pharmaceutical companies wishing to market their drugs in E.U. countries can choose to use the EMA's centralized drug approval procedure or submit drug approval applications directly to one or more member states. The benefit of using the centralized procedure is that, if successful, the drug approval extends across all E.U. countries. The downside is that the centralized procedure contains requirements that are not necessarily included in an individual country's application process. The centralized procedure must be used for certain drug classes; for example, certain biologicals and medicines for the treatment of AIDS, cancer, diabetes, and orphan medical products can only be approved for sale in the E.U. through the centralized procedure.

Drug Approval Process under the Centralized Procedure

The EMA has very specific requirements concerning the development of medication information as part of its marketing approval process. Materials must be prepared in English for the initial review process. If the drug receives preliminary approval (subject to further review and final approval), the medication information must then be translated by the manufacturer into 24 languages and Braille.

The EMA provides oversight for consumer-directed medication information through its Working Group on Quality Review of Documents, which conducts a detailed review of the English-language version of the medication information. In addition to the content, the review covers the style and layout of the information. The Working Group reviews the labeling and package information leaflet and, if satisfactory, the materials are forwarded to representatives of each member state, who in turn conduct their own review of the English-language versions of the medication information. Some additional back and forth discussion during the review process is common between the applicant and the various national and EMA reviewers. A team of medical writers also conducts a review of the documents and submits a final decision regarding approval of the documents as one component of the overall drug application.

EMA decisions to approve medications are conditional upon the applicant's submission of translations of the approved English-version medication information into 24 other languages plus Braille.

Pharmaceutical Labeling Requirements

An important feature of drug packaging in the E.U. (and most of the industrialized world) is that medicines are not generally shipped in bulk for repackaging in pharmacies, but instead are packaged for individual consumers with tablets generally supplied in blister packaging.

The EMA requires pharmaceutical companies to provide information to consumers on two areas of the drug's package as well as via a leaflet included with or inside the package (see Table l). These are referred to as the outer packaging, the inner packaging, and the patient information leaflet.

Outer Packaging

The box which holds the blister pack, bottle, or other direct container of the drug constitutes the outer packaging. The outer packaging must contain the product's name, strength, active substances, method of administration, and any necessary warning statements (e.g., keep out of reach of children). The outer packaging must also include the expiration date, the production batch number, storage instructions, disposal instructions for unused doses, as well as the name and contact information of the manufacturer. Individual member states may require additional information on outer packaging, such as information regarding the cost of the drug and how it can be accessed through various social service agencies.

Inner Packaging

The inner packaging is the container that directly encloses the pharmaceutical. Inner packaging is required to display the same information as the outer packaging. The majority of prescriptions in the E.U. are distributed through blister packs, which provide too little space to include all of the required information and still meet guidelines for legibility and comprehensibility. For this reason, most inner packaging qualifies for an exemption from this requirement. At a minimum, blister packs must contain the name of the drug and manufacturer, the expiration date and the batch number.

Patient Information Leaflet

The Patient Information Leaflet is provided to consumers separately with each prescription purchased at the pharmacy or included within the outer packaging. It is the most comprehensive information provided with each drug. In addition to many of the items required on the outer packaging, the patient information leaflet includes the approved indications of the drug, contraindications, interactions with drugs, food, or other substances, drug administration instructions, reported side effects, and a detailed list of drug components. Individual member states may require additional information, commonly referred to as a “blue box,” that provides country-specific information such as price, health insurance coverage details, and availability through social service agencies.

The patient information leaflet must be written specifically for and reviewed by consumers. As part of the marketing approval process, the EMA requires manufacturers to undertake targeted patient reviews of the English-language versions of the leaflets to make sure that they are legible, clear, and easily understood. Generally, this takes place through consumer testing of patients' understanding of important components of a draft version of the leaflet. The results of these consumer tests must be included in the initial marketing approval application to the EMA and are taken into account when revising the materials. Consumers are targeted based on the intended users of the drug; for example, leaflets on diabetes medications must be tested by consumers with diabetes.

Translation Process

The outer packaging and patient information leaflet must be available in the official language or, in the case of countries like Belgium that have multiple official languages, the languages of each of the E.U. member states in which a medication is sold. In countries with two official languages, both languages must appear on all medication labels. Additionally, the name of the drug must be printed in Braille on both the outer and inner packaging, and the entire patient information leaflet must be available in Braille on request.

The window for completing the required translations is remarkably short. Pharmaceutical manufacturers must submit translations of their English-language versions of packaging and patient information, in 24 other languages plus Braille, to the EMA no longer than five days after the initial application has been granted conditional approval. In practice, companies begin the translation process long before the English-language versions have received conditional approval. After they have been submitted by applicant companies, the EMA forwards the translations to regulatory agencies in member states for review and comment. France and Germany, for example, review the French and German materials to be used in member states where these languages are spoken. The review process for the translated documents is also quite rapid. Designated E.U. member state pharmaceutical regulatory agencies must complete their language-specific reviews within two weeks of receiving the translated medical information, at which point they provide comments and questions for the applicant. Guidance from the European Commission on requirements for translation of the patient information leaflet states that the translations should be “faithful [to the user-tested English-version,] allowing for regional translation flexibility, whilst maintaining the same core meaning,” rather than a literal translation of the English words, which could be confusing or change the meaning of the original.

The short (five-day) turnaround time between initial approval and submission of translations is considered very onerous by the pharmaceutical industry. The two-week translation review period at the country drug agency level is also considered inadequate. Translation review duties are often in addition to the regular demands of the jobs held by reviewers and deadlines are often missed, delaying the application review. Revised translations indicating how comments by reviewers have been addressed are submitted along with the full drug application.

Pharmaceutical companies use both staff and contractors to prepare translations. Information on the cost of the translation process to manufacturers is proprietary; however, one estimate suggests that the resources necessary to complete the translations correspond to two full time equivalent employees. Despite the burden associated with the translation process, pharmaceutical manufacturers routinely use the centralized procedure to gain access to a drug market of over half a billion people. The efficiencies associated with the centralized procedure greatly offset the relatively small costs associated with translations.


Discussion

Pharmaceutical regulatory policies in the U.S. and E.U. have addressed the need for information to support consumers' safe use of medications, with the E.U. taking explicit steps to mandate the availability of the information in the official languages of its member states. Most attention in the U.S. has focused on the dispensing label to convey information to patients about the medication they have been prescribed and their treatment regimen. Other forms of consumer-directed information (patient package insert and medication guides) are required by the FDA, although one of the most common forms of information--the CMI that is usually stapled to the prescription at the point of purchase--is unregulated and highly variable. As noted above, the FDA does not require medication information to be available in any language other than English, despite an acknowledged need for the information, a rapidly growing LEP population, and an appreciation of the cost to patients and the health system from medication errors.

The drug approval process in the E.U. provides a clear example of how readily medication information can be made available in multiple languages. Embedding the development of approximately two dozen translations of medication information in the marketing approval process accomplishes several things. First, pharmaceutical manufacturers have a strong incentive to complete all required translations expeditiously, since drug approval is contingent upon this process and a review of the documents is incorporated into the drug approval timeline. Second, bundling multiple translations into a single requirement means that new member states that participate in the EMA approval process have their official languages automatically included. This eliminates often contentious debates about the appropriate threshold of market penetration of various language groups for translating documents into particular languages. Finally, extremely narrow time windows for submission of translations to the EMA and the review of those translations at the country level support a process that does not substantially delay market entry.

Pharmaceutical manufacturers in the E.U. reportedly find the translation requirements to be burdensome, but they do not complain that they are technologically or organizationally complex. According to representatives from the EMA, companies routinely comply with the translation requirements and are able to submit documents in multiple languages, generally within the scheduled timeframes. Drug applications are often prepared through contractual relationships with translation firms that are familiar with the E.U. requirements related to quality and timeliness. While not without cost, the translations do not appear to add significantly to the cost of preparing an application for marketing approval.

The E.U. experience should lay to rest the notion that the translation of medication information into multiple languages is an impossible or even impractical task. Requiring pharmaceutical companies to prepare translations of medication information in the official languages of the E.U. as part of the drug approval process, according to clearly specified standards and criteria, has resulted in transformational practices that are now taken for granted.

Despite the differences in practices between the E.U. and the U.S., the E.U. example can serve as a model for the U.S. to improve the quality and availability of medication information in LEP patients' own languages. Requirements related to the translation of medication information on the part of manufacturers, for information already regulated by the FDA, could be incorporated into the U.S. drug application process. Uniform translations could be distributed along with medications from manufacturers to pharmacies across the U.S., where they could accompany prescriptions at the point of sale. The proposed process would replicate the information included in E.U. packaging without disrupting the pharmacy's dispensing function.

The focus on the pharmacy and the prescription label holds promise for improvement, but so does an equal spotlight on the drug manufacturers, whose customers make up a much more linguistically diverse group than those of the typical retail drugstore. Many of the pharmaceutical companies responsible for providing translations for the marketing approval process in the E.U. are the same companies selling pharmaceuticals in the U.S., and thus, already have some capacity to provide translations of medication information in many of the languages spoken by LEP persons in the U.S. Combining a requirement for uniform, clear, and understandable medication information in multiple languages at both the pharmacy and pharmaceutical manufacturer levels could substantially advance the safety of medication use among persons with limited English proficiency across the U.S.


 

Marsha Regenstein, Ph.D., M.C.P.,is a Professor in the Department of Health Policy at the George Washington University School of Public Health and Health Services in Washington, D.C. and served as the Director of Speaking Together: National Language Services Network.

Ellie Andres, M.P.H.,is a Senior Research Associate in the Department of Health Policy at the George Washington University School of Public Health and Health Services.

Dylan Nelsonis a Senior Research Assistant in the Department of Health Policy at the George Washington University School of Public Health and Health Services.

Stephanie David, J.D., M.P.H.,is an Assistant Research Professor in the Department of Health Policy at the George Washington University School of Public Health and Health Services.

Ruth Lopert, B.Sc, B.Med., M.Med.Sc, F.A.F.P.H.M.,is a Visiting Professor in the Department of Health Policy at the George Washington University School of Public Health and Health Services.

Richard Katz, M.D.,is the Bloedorn Professor of Medicine and Director of the Division of Cardiology at the George Washington University Medical Faculty Associates.

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