The Ethics of Disease Prevention and Control

The Tuskegee experiment is a quintessential representation of the progression of ethical standards in research.  Funded by the United States Public Health Service (USPHS), the study examined few hundred black men who tested positive for syphilis, from 1932 to 1972.  Participants were chosen from five counties in the south, namely Tuskegee, Alabama, where high instances of syphilis were discovered.  An all black sample was chosen partially because researchers believed that the disease affected this population differently, as a result of both biological predispositions and social factors.  Participants were told that they would be treated for the disease and to not accept outside treatment.  Even with the discovery of penicillin as a known cure for syphilis, participants were denied access.  This was justified on the grounds that these “conditions existed ‘naturally’ and that the men would not be treated anyway” (8).  Clearly this was untrue, but performing the experiment under these terms resulting in, as asserted by Reverby, a “self-fulfilling prophecy” (8).

The study, as confirmed by the Tuskegee Syphilis Study Panel in 1972, was unethical on numerous grounds.  Informed consent was not provided, participants were not treated when remedies became available, control group members were simply added to experimental group if infected, and perhaps worst of all, researchers were essentially waiting for autopsies to confirm their results.  As Reverby reflects, “the Tuskegee study revealed more about the pathology of racism than it did about the pathology of syphilis” (18).  Not only were subjects poor and unassuming, they were uneducated on the nature of the experiment itself.

This study is proceeded by roughly three decades of intense debate over research ethics.  Concerns rose over whether employing animals or humans was more morally sound, as passionate disputes between vivisectionist and anti-vivisectionists dominated clinical studies.  Questions regarding animal welfare, ease of gathering results, the similarities (or lack thereof) in animals and humans, and financial gain all played into the development of newfound ethnical standards.

These concerns are further complicated when extending to research performed in Third World Countries.  According to Angell, participants must receive the best possible treatment available, even in the placebo group.  It is tempting for researchers to be careless in complying with ethical standards in the search of swift and clear results, arguing that those involved would not typically be receiving any treatment at all.  As Rivers argues, “unless the law winks occasionally, you have no progress in medicine” (Reverby 16).  As Reverby illuminates, just before the Tuskegee experiment, prisoners in Guatemala were horrendously inoculated with syphilis and subsequently treated with penicillin.  This study in particular demonstrates the importance of America’s ethical guidelines, although they were still not adequately followed.  However, the well being of those involved must always take precedence over scientific discovery. Lurie and Wolfe provide a solution to this dilemma, illustrating how a shortened regime of a proven solution, juxtaposed with the ordinary placebo can offer similar results without the ethical hurdles and excessive cost.

Domestically, more commercially based matters also exist, like the anti-smoking debate, coming to a head in 1964.  Common knowledge at this point believed smoking to be poor for one’s health.  However, Americans needed further statistical support to believe these rumors. The advisory committee, formed in 1962, determined that evidence is causational rather than correlational if it is:

“1. Consistent

2.Strong

3.Specific

4. Supportive of appropriate temporal relationships

5. Coherent” (Brandt 164)

However, even when smoking was deemed to directly result in adverse health effects, the surgeon generals warning initially only implied that smoking “May Be Hazardous to Your Health” (Brandt 165).  Years passed before this slogan was adapted to comply with its causative negative consequences.  Conflict arose and continues to occur over influence the government possesses over issues like cigarette smoking.  As Brandt explains, there is minimal support for an outright ban.  Nonetheless, the question remains whether the government is justified in outlawing the practice in public places.  The discussion again revolves around at what point a public health issue becomes a political responsibility.

In scientific research, there are almost always ulterior motives at play.  Researchers want to be commemorated in their field, special interest groups want to make a profit, and politicians want to adhere to public opinion.  Ethical guidelines are socially constructed, and thus are subject to the confusing, variances in human behavior.  In order to advance humanity as a whole, individuals often must make sacrifices and take risks in aiding the advancement of empirical research.  It is the responsibility of both government and the scientific community to regulate the system and ensure that all people, regardless of race, gender, ethnicity, or country of residence are fairly treated.   Nonetheless, the question I leave you with is this: is it ever acceptable to abandon some ethical guidelines for the benefit of society overall?

-Jacqui Larsen