Chapter 9 in Medical Ethics is focused on medical research on vulnerable populations. It's important that we discuss ethical issues in medical research regardless of who it involves, but especially when it comes to vulnerable populations. It is infuriating to read about past medical "experiments" involving human patients that violate ethics, and equally appalling is the fact that many of these "experiments" occurred not that long ago. We know that racial disparities (among others) persist in healthcare, and claiming that they do not is ignorant and irresponsible. In light of the current political climate and the ongoing fights for social justice, I've heard variants of the phrase "I don't know how to explain to you that you should care about other people" a lot more often over the last 6-8 months or so. That phrase also applies to this chapter. Dismissing human lives because they are somehow "less than" or are being used as a "means to an end" is not okay. The argument that these people are probably going to die anyway is not a justification to involve them in research, especially when consent is not obtained and the experiment is not explained to them. The mental gymnastics required to reach the conclusion that exploiting other humans, often without their consent, is acceptable in healthcare (and in general!) are completely mind-boggling to me.
Anyway, let's move from my personal opinion back to the actual ethics discussed in the chapter.
The chapter opened with brief overviews of medical "experiments" performed by the Nazis during WWII, followed by a mention of the Nuremberg trials in which German physicians defended themselves against charges of war crimes by saying that they had merely been following orders (Pence 214). From there, the author moved to questionable research performed in America around the same time, research which often involved injecting patients with various levels of radiation. From WWII to the mid-1970s, American physician-researchers subjected over 16,000 patients to radiation experiments (Pence 215). Many of these experiments were justified and/or covered up by the US military.
Following these, the author went into an in-depth explanation of the Tuskegee Syphilis Study, a study that is infamous in public health and biology for the lack of ethical treatment of its subjects. There are several ethical issues involved in the Tuskegee study, including the lack of consent, use of deception, blatant racism, ineffectual media coverage, harm to subjects and their families, and the motives of the researchers. In general, the purpose of healthcare is to help and support people with the goal of improving their health and quality of life. While some may argue that if no harm can be proved, nothing unethical has taken place, ultimate consequences aren't the only way to argue morality or ethics. In the case of the Tuskegee study, penicillin could have helped these patients, and resources were available to aid them. Instead, researchers deliberately willed harm on these subjects by using them as "mere means" to an end (Pence 225).
The textbook cites several other cases that involve research on vulnerable populations, but ultimately the conclusion is reached that informed consent should always be required before moving forward in any research involving humans, and people should never be exploited or taken advantage of. Even in the name of medical advancement. If consent can be attained (not coerced) and an agreement reached, some research can be ethically and morally justified. Without it, choosing to conduct medical research on vulnerable populations is one of the worst possible uses of free will.
Textbook reference:
Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.
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