INFORMED CONSENT AND RISK
INFORMED CONSENT AND RISK
The Intersection of Human Research and Genetics
Chapter 5 presents an overview of ethical challenges to human research, especially the paradoxical relationship between research risks (mostly to the subject) and benefits (mostly to society and science), and the problem of informed consent (distinguishing research from therapy). Informed consent and risk/benefit analysis are particularly complicated in genetics research, with its eugenics implications, uncertainties about disease likelihood, and controversies about who should be considered a subject and who should provide informed consent. Obtaining truly informed consent may be an unreachable ideal for human genetics research or, indeed, for any human research. Increased public participation in decision making and establishing compensation for research-related injuries would provide additional needed protections to human subjects at the beginning and the end of every human research study.
Keywords: benefit, controversy, disease, eugenics, genetics, human research, human subject, informed consent, risk, therapy
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