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Forbidden knowledge. A case study with commentaries exploring ethical issues and genetic research.

Brian Schrag·Latisha Love-Gregory·Karen M Muskavitch·Jennifer McCafferty
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Abstract

This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers' responsibilities to the community as a whole and to individual subjects; of the impact of the researcher's findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored.

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Congenital AbnormalitiesEthicsEthics, ProfessionalFemaleGene FrequencyGenes, RecessiveGenetic ResearchGenetic TestingHumansInfant, NewbornInformed ConsentMaleMarriageOrganizational Case StudiesReligion and ScienceUnited StatesBiomedical and Behavioral ResearchGenetics and ReproductionJournal Article

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Brian Schrag, Latisha Love-Gregory, Karen M Muskavitch, Jennifer McCafferty. 2003. Forbidden knowledge. A case study with commentaries exploring ethical issues and genetic research.. https://doi.org/10.1007/s11948-003-0037-6

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