Informed consent in genomics and genetic research.
There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible.
McGuire
Amy L
AL
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA. amcguire@bcm.edu
Beskow
Laura M
LM
D036281:Genetic Research / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D007258:Informed Consent; D013048:Specimen Handling; D014481:United States