Following up on my last few posts on the importance of informed consent in medical research, I wanted to dig deeper into the practice of clinical trials and patients' rights in medical research. The concept of informed consent, the basis of which is the stipulation that people will make the right choice for their own health and wellness, is a well-established principle of bioethics. However, it is less clear about its prevalence in public health, and the recent covid-19 pandemic has further stoked discussions about patients' rights and value of consent in the face of a global health event.
The DNA genetic testing company, 23andMe, has also demonstrated how consent is an obstruction to researchers’ ability to use and exploit personal data. It is known that the company's primary goal is to gather genetic data that can then be used for research. However, the company has feined an interest in empowering individuals to take control of their own health, and used that for their marketing play. This shows how an interest in public health can be a facade for research gains.
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| DNA Collection home kit from 23andMe |
With research being funded by western corporations, it is not unlikely that the intentions of clinical trials are often corrupted to emphasize profits over people. Historically, this is a well-established and proven phenomenon. In the 1990s, the heart medication drug, BiDil, developed by NitroMed was rejected in clinical trials conducted on a multiracial population, having been found to have no significant effect on heart disease. Shortly thereafter, it was approved by the FDA for the African American population without a clear explanation as to why it would be more effective for a certain race. In reality, the drug was retested for just a portion of the population because the researchers and developers wanted it to prove effective, not for the sake of the people it may help, but rather due to the prospect of financial payoff. Considering there were no grounds to believe that black people might respond differently to the drug than whites, the conclusion that it is effective for that specific population seems weak and arbitrary.
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| BiDil approved for cardiac disease in African Americans |
In Race and Reification, by Troy Duster, the ramification of these spurious connections are described as harmful because “race is such a dominant category in the cognitive field that the ‘interim solution’ can leave its own indelible mark once given even the temporary imprimatur of scientific legitimacy by molecular genetics” (Duster, 1). The effect of this drug is far more detrimental than useful for black people, making it a clear example of pharmaceutical companies exploiting the health of black people for financial gains. It is this lack of respect for personhood that allows western researchers and pharmaceutical companies to also dissociate from the altruistic goal of improving healthcare.
While research into genetics and genomics is important and does, in theory, help improve the health of the general population, such is the case for vaccination as well. It is important that people have the right to their own data and health, and the existence of consent laws is the conduit through which this power check occurs. It is also important to realize how politics can impact and corrupt the goals of healthcare enterprises.
The same can be said about the malaria vaccine rollout in Africa, the subject of my previous blogs. Much of the criticism of the malaria vaccine is rooted in the fact that many of the practices of the rollout closely resemble that of research trials rather than the clinical implementation of an approved and tested drug. One such example is the randomization of the participants. By treating the rollout as further testing – and not labeling it as such – the WHO and the companies providing the vaccine are able to bypass a lot of the international laws concerning medical ethics. It further allows them to use the people as specimens without any power over their participation. The push for vaccine rollout can be therefore, be seen as a lab experiment on real people as opposed to a humanitarian effort to help end the suffering of millions. These insidious alternative motives demonstrate how public health can be a powerful tool to gain sovereignty and further their own research goals.
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