Ethical issues in genetic research: disclosure and informed consent.
As research to correlate genetic status with predisposition to disease has accelerated, so has the concern that participation in such studies creates the risk of genetic discrimination and emotional distress. There is a need to broaden disclosure during the consent process to ensure that potential subjects understand these risks and other issues and to address them in the consent form. We describe the broad approach that we have taken in regard to disclosure and consent in gene mapping studies.
Reilly
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PR
Shriver Center for Mental Retardation, Waltham, Massachusetts 02154, USA.
Boshar
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Holtzman
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D000328:Adult; D002648:Child; D002874:Chromosome Mapping; D032962:Consent Forms; D030561:Databases, Nucleic Acid; D030881:Disclosure; D028744:Ethics Committees, Research; D004992:Ethics, Medical; D035082:Federal Government; D030661:Genetic Privacy; D036281:Genetic Research; D005826:Genetics, Medical / Q000331:legislation & jurisprudence; D033161:Government Regulation; D017408:Guidelines as Topic; D006801:Humans; D033162:Incidental Findings; D007258:Informed Consent; D011287:Prejudice; D012106:Research / Q000331:legislation & jurisprudence; D035842:Research Subjects; D014342:Truth Disclosure; D014481:United States