PubMed · 12440433
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Jennifer Mitchell Canaday. 2002. HIPAA - help!. https://pubmed.ncbi.nlm.nih.gov/12440433/
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RATIONALE: Psychiatric genetics research warrants ethical consideration because of the complex nature of conducting research among affected families. When researchers identify compelling reasons to offer susceptibility data to participants, they face challenges to identify an infrastructure to convey information and means to ensure that undue research risks are not encountered. OBJECTIVES: To outline ethical issues in conducting research in psychiatric genetics with the aim of considering how the identification of susceptibility genes for psychiatric disorders may shape future research; to provide points to consider for conducting psychiatric genetics research with the anticipation of offering susceptibility data to participants. METHODS: Ethical issues that arise in psychiatric genetics research conducted with affected families are discussed along with reasons susceptibility data may be offered to participants in the future. RESULTS: We suggest that all researchers, even those who have no intention of offering susceptibility genetic results, consider how advances in knowledge might affect the provision of research findings. CONCLUSIONS: Existing ethical issues are likely to become even more pressing as susceptibility genes are identified for major psychiatric disorders. It behooves researchers, mental health professionals, and geneticists to consider how to use our growing scientific knowledge to best help participants in ways that anticipate and prevent, rather than respond to, ethical conflicts.
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