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The Scarlet Gene: Behavioral Genetics, Criminal Law, And Racial And Ethnic Stigma, Karen H. Rothenberg, Alice Wang
The Scarlet Gene: Behavioral Genetics, Criminal Law, And Racial And Ethnic Stigma, Karen H. Rothenberg, Alice Wang
Faculty Scholarship
Imagine that a scientist from the state university asks you and your family to participate in a study on a particular gene variant associated with alcoholism. The project focuses on your ethnic group, the Tracy Islanders, who have a higher incidence of alcoholism, as well as a higher incidence of the gene variant, than the general population. You will not be informed whether you have the gene variant, but your participation in the study might help scientists develop drugs to help individuals control their addiction to alcohol. You have a family history of alcoholism, and you are concerned that your …
Undesirable Implications Of Disclosing Individual Genetic Results To Research Participants, Leslie Meltzer Henry
Undesirable Implications Of Disclosing Individual Genetic Results To Research Participants, Leslie Meltzer Henry
Faculty Scholarship
The bioethics and legal community are divided over whether investigators who conduct biomedical research are ethically and/or legally obligated to disclose incidental genetic findings to research participants. This paper argues that the justification for disclosure rests on the mistaken view that principles of beneficence, respect, reciprocity, and/or justice require researchers to offer participants individual genetic results. Whereas these principles and others obligate physicians to share individually relevant results with patients with whom they share a fiduciary relationship in the clinical care setting, they do not similarly obligate investigators to share such information with participants in the research setting. Furthermore, proposals …