How Much Do We Care When Truth Replaces Fiction? Ethical Conduct and Human Subjects Research in Africa
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Like it or not, movies are one of the most critical vehicles for disseminating culturally relevant information to audiences worldwide. One subject that continues to cry out for truthful screen characterizations is the chronic injustice of racial exploitation against persons of color throughout history. Those who did not experience a sense of outrage after viewing Amazing Grace must possess truly seared consciences. Although Amazing Grace chronicled the late 18th and early 19th Centuries’ abolition of slavery through the work of William Wilberforce and the Clapham Sect, our own age has been a willing accomplice that continues to oppress on the basis of race. Interestingly enough, though, cinema may be uncannily prophetic on this very point.
The Constant Gardener, a cinematic version of a novel written by John Le Carre, depicts a pharmaceutical company that indiscriminately tests drugs on poverty stricken Africans. It is further alleged that those complicit are "willing to accept deaths that may occur because, after all, those people don’t count." 1 The author of this salient quote, none other than Roger Ebert, then proceeded further to query, "do drug companies really do this?" Surely this could never happen in our contemporary world. Unfortunately, here fiction does not wander too far from reality.
In 2000, a disturbing study was reported2 and criticized3 in the New England Journal of Medicine. For 30 months, several hundred people in Uganda infected with HIV were observed, but not treated for their disease. Furthermore, in couples where only one partner was infected, it was left solely to the discretion of the infected partner to inform the uninfected partner. If the infected individual did not inform his/her partner that piece of critical (and eventually fatal) data was not divulged by the investigators. Despite the real risk of death from infection, confidentiality throughout the study was deemed an absolute good.4 The editorialist suggested that the Ugandan study would never have been approved in the US, and I agree.
Fast-forwarding to more recent news, eleven children died in Nigeria during trial studies of a certain name-brand antibiotic for the treatment of epidemic meningitis. On June 9, 1999, the FDA issued a public health advisory to physicians in the US regarding this particular antibiotic in an effort to severely restrict its use. Recently, Nigerian families adversely affected by the drug have brought suit against this pharmaceutical manufacturer, alleging that investigators did not obtain proper consent and also that they did not explain that the trial use of the drug was experimental.5 The pharmaceutical company responded that the mortality rate from the drug was actually lower than that from the epidemic of meningitis! Adding to the ethical ramifications, the control group was allegedly treated with a drug approved for the treatment of meningitis, but at a lower than usual dose, and 6 more children died. If this fact is true, this group should have received standard therapy. It also has been alleged that a lower dose was prescribed only to make this name-brand antibiotic look better in the treatment arm. Finally it alleged that the pharmaceutical company did not tell parents that they could refuse to participate in the study and still have their children treated free of charge with approved, non-experimental therapy.
Admittedly, contemporary bioethics has a full plate. This is no surprise since Human Dignity is under assault on every front, from the pre-born to the dying—from womb to tomb. We must be alert, however. Focus on critical areas like fetal tissue research and the fallout of the genetic revolution, as examples, can obscure the reintroduction of old sins like racism—insinuating themselves into new and deadly bioethical disguises. From the fight against slavery by believers of the Clapham sect, through the hubris and avarice of colonialism, and now to market-driven attacks against human dignity by researchers and pharmaceutical companies, the bioethical agenda must make a place for the vulnerable no matter where they reside, and in this instance, specifically because of their color.
1) The Constant Gardener at rogerebert.com (9-1-2005) accessed October 2nd, 07.
2) Quinn, TC; Wawer, MJ; Sewankambo N, et al. Viral Load and heterosexual transmission of human immunodeficiency virus type 1. N Engl. J Med 2000; 432: 921-929
3) Angell, M. Investigators’ responsibilities for human subjects in developing countries. N Engl J Med. 2000; 432:
4) Rutecki, GW. Clinical Case 2 Commentary: "Please don’t say anything": partner notification and the physician-patient relationship. AMA Virtual Mentor, 11-3-2003. Http://virtualmentor.ama-assn.org/2003/11/ccas2-0311.html.
5) Stephens, J. "Pfizer faces criminal charges in Nigeria" at washingtonpost.com, 5-10-2007, accessed 10-02-07.