Fueling Feelings of Mistrust: Inadequate Actions for the Greater Good

Tami Wisniewski wrote this article.

Literature serves as a catalyst for thought. Implicit in the idea of reading is the notion of action. This action can be accomplished on two levels: the “private” or personal interpretation of the literature, and its “public” or communal meaning. While these two levels of interpretations may not always be in conflict, the messages conveyed may not be inherently similar either. Private interpretation allows the reader to identify with the content of the literature, and consequently make personal judgments. These personal judgments however, can sometimes neglect to reflect on the public interpretation; essentially what greater good is served by the literature. However, the greater public good can be questionable. In essence, this greater public good may be an excuse that explains away the perversity of a particular topic expressed in the literature. The question must be posited: do we learn from the mistakes presented through the greater public good, or do we merely re-form the problem within another context?

One example through which a conflict between the private and public interpretation occurs is in Bad Blood: The Tuskegee Syphilis Experiment. The private interpretation of the story is readily available. A prolonged and unnecessary experiment was undertaken by federal, state and local agencies that clearly violated ethics on multiple levels and compromised the lives of 300 black men and their families. The story, for many people, evokes notions of rage, disbelief and mistrust of scientific research motives. Magnifying the rage even more so is the fact that, at the time the book was published (1981, 1993), no formal apology had ever been offered by the United States government. Few can argue with this generalized interpretation, although many private interpretations may be able to excuse certain nuances of the study. For example, some people may be able to excuse the initial observations of untreated syphilis, simply because the risks of treatment in the 1930’s may have outweighed the benefits, and economic constraints during the Great Depression made widespread treatment impossible (Jones, 1981).

If considered through a communal interpretation, the public benefit gleamed from the story may not be as obvious. Certainly, some good must have come out of the story. In fact, the public exposure of the Tuskegee Syphilis experiment prompted Congress to pass the National Research Act of 1974, which mandated the existence of institutional review boards, and required their approval for all research involving human subjects (Gamble, 1997). Additionally, the notion of informed consent was thrust into the forefront of the discussion on research ethics. As Jones asserts, the decision that the study was ethically unjustified “. . .rested on the government’s failure to obtain the informed consent of the participants in a study of a disease with a known risk to human life” (Jones, 1981: 211). By exposing some of the principles that should be incorporated in good research, the public was made aware of some of their rights as participants in research.

The medical community was also forced to confront the possibility of unequal treatment based on race. Although this confrontation did not occur through further exploration of the Tuskegee Study, in fact, it seems as though medical professionals wanted to move past the problems evoked by the study by ignoring it (Jones, 1981), the confrontation did occur within the context of other diseases, particularly AIDS and heart disease. In 1989, a study was published in the Journal of the American Medical Association focusing on the disproportionate number of blacks suffering from heart disease (Gamble, 1997). As a result the American Medical Association requested that

“‘. . .physicians should examine their own practices to ensure that inappropriate considerations do not affect their clinical judgment'” (Gamble, citing AMA, 1997:Ovid p.8).

When assertions that AIDS was another form of genocide, akin to the Tuskegee Study, began to surface in the black community in the late 80’s, Thomas and Quinn explored the issue further (Jones, 1981). Their recommendations invited health officials to confront the fears that surfaced as a result of the Tuskegee study (Jones, 1981). They further claimed that only in doing so, would officials be able to design effective HIV/AIDS education programs (Jones, 1981). Although these recognitions came years after the exposure of the Tuskegee Study, they nonetheless reflect a shift in research toward understanding that personal beliefs may compromise medical treatment, both for the afflicted and the physician. By exposing health disparities, the need for eradicating them, and ways in which this can be done, are implied. And by exposing barriers to treatment, insights into removing these barriers can also be offered.

Although there are several lessons that can be learned from the Tuskegee study, and these learned lessons can benefit the public good, it is necessary to consider whether or not they actually have been learned, and therefore whether any public benefit has been derived from them. In a paper exploring the reasons for African-Americans’ distrust of research, Gamble asserts that the Tuskegee Study is merely one aspect of a long history of racism in research that has prompted mistrust. She discusses mistreatment of blacks in research dating back to pre-Civil war times, and contends that, “there is a collective memory among African-Americans about their exploitation by the medical establishment” (Gamble, 1997: Ovid p.5). This collective memory extends beyond the medical establishment and into a broader social context. Corbie-Smith and colleagues conducted a focus group analysis of African-American’s attitudes toward participating in medical research. They discovered that “many participants articulated concern about the actual benefit of research for the broader African-American community” (Corbie-Smith et al., 1999: Ovid p.7). They provide one particularly telling comment by a participant: “‘If I do all this and it benefits society and everything, given the way brothers [blacks] are treated, how is it going to help me?'” (Corbie-Smith et al., 1999: Ovid p.7) This comment suggests that there is an inherent disbelief that the African-American community will derive any benefit whatsoever from participation in research, despite the fact that such participation allows for generalizations to be made within the specific context of the black community. Even if the research is tailored toward learning about specific diseases within the black community, this comment further suggests that such knowledge will not come to benefit the African-American community at large because of the general mistreatment of blacks in the United States.

Perhaps the treatment of blacks within the generalized public sphere can offer insights into the establishment of this collective memory, and their inherent distrust of not only medical research, but public policies as well. Morone offers one explanation through an examination of morality within American history. He suggests that morality serves to divide a community into “us,” or those with morals, and “them,” those without, and further, that once these boundaries have been established, “. . .political agenda shifts from assisting others to controlling them” (Morone, 1997: 999). He uses the drug war as one example of the construction of this divisive line between whites and inner city minorities. Citing research, Morone shows that, despite similar rates of drug use within the populations, blacks go to jail more often, and suffer disproportionate penalties for drug possession (1997). Two consequences result form these practices: whites perceive that blacks are the problem, and since “they” are the problem, and not “us,” “they” must be controlled. As Morone claims, “illegal drugs also perpetuate the trusty impulse to rest social problems on individual shoulders” (Morone, 1997:1012). What is so ironic is that the use of illegal drugs is just as rampant in white society as it is in black, but somehow, this fact is conveniently swept under the carpet by policies that disproportionately enforce the criminalization of drugs within the black community.

Although public health advocates treatment and prevention as the most effective means of curtailing drug abuse, this notion “aggregates the population rather than segregating it” (Morone, 1997:1015). Because this notion does not operate within the context of the segregationist mentality, it has no hope for support within the “us” portion of the community. Since it is generally, the “us” portion that controls the power and shapes policy, it seems that little hope exists for policy change. As a result, the black community continues to suffer institutionalized racism and marginalization from the political agenda. This extends beyond the political agenda, and into all facets of life, including medical research.

Even if the collective memory of mistrust is addressed, there continues to be questionable treatment of blacks in medical research, well into the present day. Gamble cites a study assessing the efficacy of an experimental measles vaccine in Los Angeles in 1991 as one example. In this study, many black and Latino infants were given the experimental vaccine despite the fact that parents were not fully informed that it was unlicensed in the United States, and increased death rates had been observed in Africa (Gamble, 1997). In a more recent case, the Kennedy Krieger Institute affiliated with Johns Hopkins University was accused of research misconduct by failing to fully inform families of the full risks of their study involving lead abatement practices in low-income housing (Glantz, 2002). In the study, assessments were made regarding the efficacy of different types of lead removal practices. The assessments involved periodic monitoring of lead levels of children living in the homes to assess which practices were most efficient (Josefson, 2001). While it is clear that in order to determine benefits to the public at large, some risk must be undertaken, what is less clear is how families could not be fully made aware of all the risks entailed in these two studies. Additionally, the fact that both studies involved blacks, Latinos, and low-income families (which are disproportionately composed of minority populations), raises even more concern.

One could argue that the research enabled health officials to determine cost-effective practices for lead abatement, and that, in conducting the research a step toward lead abatement was accomplished where none had previously existed. In essence, if the families had not participated in the research they would have been exposed to lead anyway. While this argument has merit, it seems very similar to the argument used to justify the initiation of the Tuskegee experiment. As Jones states: “The fate of syphilitic blacks in Macon County was sealed (at least in the immediate future) regardless of whether an experiment went forward. Increasing the store of knowledge seemed the only way to profit from human suffering there” (Jones, 1981:94). In essence, blacks were going to live with untreated syphilis anyway, so observing the effects would not produce any increased harm.

Although the legacy of the Tuskegee study does offer the potential for the furthering of a greater, public, good, it seems that this potential has yet to be fulfilled. Despite the fact that advances have been made in research participants’ rights, it seems that these advances better serve the wealthy and the white, than all of America. Further, one must wonder if the notion of the Tuskegee study as serving the greater public good is just another attempt to excuse the continual mistreatment of blacks in the United States. For if we really learned from our mistakes, if the greater good of the population at large was really furthered by the exposure of the Tuskegee Study, why, in 2003, would the Secretary of the Department of Health and Human Services, alter a scientific report on health disparities (Vastag, 2004)?

References

– Corbie-Smith, G; Thomas, SB; Williams, MV; Moody-Ayers, S. Attitudes and Beliefs of African Americans Toward Participation in Medical Research. [1999]. J of Internal Medicine. 14(9): 537-46.

– Gamble, VN. Under the Shadow of Tuskegee: African Americans and Health Care. [1997] Am J of Public Health. 87(11):1773-78.

– Glantz, LH. Nontherapeutic Research with Children: Grimes v Kennedy Krieger Institute. [2002] Am J of Public Health. 92(7):1070-1073.

– Jones, JH. Bad Blood: The Tuskegee Syphilis Experiment. [1981, 1993] The Free Press, New York, New York.

– Josefson, D. Johns Hopkins faces further criticism over experiments. [8 September 2001] BMJ. 323:531.

– Morone, JA. Enemies of the People: The Moral Dimension to Public Health. [1997] Journal of Health Politics, Policy and Law. 22(4): 997-1020.

-Vastag, B. Health Disparities Report. [2004] JAMA. 291(6): 684.