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Ethical Considerations and Risks in Psychiatric Genetics:Preliminary Findings of a Study on Psychiatric Genetic Researchers

机译:精神遗传学的伦理学考虑和风险:精神遗传学研究人员的初步研究结果

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Background:There are high expectations for genetic research on psychiatric disorders. In addition to anticipating potential benefits, it is important to be aware of risks and ethical concerns. Previous studies have explored attitudes of various stakeholder groups toward psychiatric genetics research and testing. This study focuses on potential risks and ethical concerns as perceived by a hitherto untargeted stakeholder group: psychiatric genetic researchers. Methods: Thirty experts in psychiatric genetic research on schizophrenia, bipolar disorder (BP), and/or major depressive disorder (MDD) were interviewed and asked about their current research. Questions dealt with researchers' beliefs about potential benefits, harms, and ethical concerns that could result from their work, as well as suggestions to ethically implement their research into clinical practice. Results: Respondents mainly discussed six ethical issues: (1) stigma; (2) prenatal testing and eugenics; (3) ethics of genetics research; (4) lack of genetic risk education among the general public and health care professionals; (5) premature commercialization and direct-to-consumer testing; and (6) lack of criteria for when to utilize psychiatric genetic tests. Bipolar and MDD genetic researchers were somewhat more likely to include moral arguments against psychiatric prenatal testing in their responses than schizophrenia researchers. Non-U.S. respondents were more likely to mention social discrimination concerns than U.S. respondents. Conclusions: Psychiatric genetic researchers' viewpoints contribute a knowledgeable perspective about the capabilities and risks of psychiatric genetics research. Researchers were concerned that expectations of genetics precede the availability of valid and reliable psychiatric genetic tests. Psychiatric genetic researchers insisted that clinical validity is still a long way away and that making important life decisions based on current data poses a significant danger.
机译:背景:人们对精神疾病的遗传学研究寄予厚望。除了预期潜在收益外,重要的是要意识到风险和道德问题。先前的研究探索了各个利益相关者群体对精神遗传学研究和测试的态度。这项研究的重点是迄今为止尚未确定目标的利益相关者团体(精神病学遗传研究人员)所认为的潜在风险和道德问题。方法:采访了精神分裂症,双相情感障碍(BP)和/或重度抑郁症(MDD)的精神病学遗传学研究的三十位专家,并询问了他们目前的研究情况。问题涉及研究人员对他们的工作可能产生的潜在利益,危害和道德忧虑的信念,以及有关以道德方式将其研究应用于临床实践的建议。结果:受访者主要讨论了六个道德问题:(1)污名化; (2)产前检查和优生学; (3)遗传学研究伦理; (4)公众和卫生保健专业人员缺乏遗传风险教育; (5)过早的商业化和直接面向消费者的测试; (6)缺乏何时使用精神病学基因检查的标准。与精神分裂症研究人员相比,双相和MDD遗传研究人员更有可能在其反应中纳入反对精神病学产前检查的道德论点。非美国受访者比美国受访者更有可能提及社会歧视问题。结论:精神病学遗传研究人员的观点为有关精神病学遗传学研究的能力和风险提供了知识渊博的观点。研究人员担心,对遗传学的期望会先于有效和可靠的精神病学遗传学测试的出现。精神病遗传学研究人员坚持认为,临床有效性还有很长的路要走,并且根据当前数据做出重要的生命决定会构成重大危险。

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