Informed Consent

As medical science continues to evolve and enter previously uncharted territories, the subject of bioethics has become increasingly important. One aspect of bioethics that has been a major focus in recent years is that of informed consent, or a patient or research subject’s right to fully understand the treatment or research that is being proposed, as well as their right to decline it. Legal regulations governing informed consent are relatively modern, and while many patients were affected by this lack of regulation prior to its inception, one demographic that has experienced a historical trend of being denied informed consent is the African American community. One of the first well-known cases of African Americans being used as research subjects …show more content…
Around this same time, the Lacks family first learned about the existence of HeLa when medical researchers contacted them to request blood samples to help them map Henrietta’s genes (Zielinski). Public revelation of these incidents helped propel the issue of informed consent into the spotlight in the 1970s, and eventually paved the way to regulations being enacted such as the National Research Act in 1974 and the Federal Policy for the Protection of Human Subjects in 1981, also known as the Common Rule. Radhika Rao, Professor of Law at UC Hastings, explains that the Common Rule requires researchers to “provide the research subject with information about the potential risks and benefits of participating in research, and must obtain informed consent” …show more content…
Past exclusions of informed consent have led to some degree of distrust for medical researchers among black Americans. According to a 1997 study, when a group of African American patients was asked what words came to mind when they heard the term medical research, the responses were often negative, including phrases such as deception, cruelty, and guinea pig (Corbie-Smith et al. 540). Researchers Catherine Earl and Pamela Penney attribute the historical absence of informed consent with creating this distrust toward medical researchers among African Americans, which in turn contributes to their low participation rates in current medical studies (753). These low participation rates create a disparity in the medical care provided to many African Americans, as medical professionals have less knowledge of how to treat diseases that most impact black

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