A preliminary comparison of the hopes of researchesrs clinicians, and families for the future ethical use of genetic findings on schizophrenia
A preliminary comparison of the hopes of researchesrs clinicians, and families for the future ethical use of genetic findings on schizophrenia
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DOI：
10.1002/ajmg.b.30249
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发表时间：
2006-01-05
影响因子：
2.8
通讯作者：
Bertisch, H
中科院分区：
文献类型：
--
作者：
DeLisi, LE;Bertisch, H
一份有关基因检测的书面调查问卷已分发给 2004 年世界精神病遗传学大会上的所有注册者，邮寄给从纽约市执业临床医生名录中获取的临床精神科医生，并邮寄给有多位患有精神分裂症的家庭成员的家庭成员。共有 274 人做出回应（162 名研究人员、64 名临床医生和 48 名家庭成员）。这项调查显示，如果可以进行基因检测，大多数完成问卷的家庭成员（83.3%）都希望接受检测。超过一半的家庭成员（56.2%）希望进行产前检查。同样，超过一半的临床医生 (56.3%) 会推荐它，尽管只有 25% 的研究人员报告它将成为未来有用的工具。所有接受调查的临床医生都认为收养机构应该告知家庭精神分裂症家族史，而只有一半的研究人员认为应该这样做（51.9%）。消费者、临床医生和研究人员之间的这些意见差异可能是由于对报告的基因变异给家庭成员带来的风险程度缺乏了解。研究人员有责任进行公开讨论，以正确看待这些风险。鼓励公开讨论从精神病学基因研究中获得的信息的伦理和社会用途及其局限性。 (C) 2005 Wiley-Liss, Inc.
A written questionnaire about genetic testing was distributed to all registrants at The 2004 World Congress of Psychiatric Genetics, mailed to clinical psychiatrists obtained from a directory of clinicians practicing in New York City, and mailed to members of families who have multiple affected family members with schizophrenia. A total of 274 individuals responded (162 researchers, 64 clinicians, and 48 family members). This survey shows that the majority of family members who completed the questionnaire (83.3%) would want to be tested if a genetic test were to become available. Over half of the family members (56.2%) would want prenatal testing. Similarly, over half of the clinicians (56.3%) would recommend it, despite only 25% of the researchers reporting that it would be a future useful tool. All of the clinicians surveyed thought adoption agencies should inform families about a family history of schizophrenia, while only half of the researchers thought this should be done (51.9%). These differences in opinions between consumers, their clinicians, and researchers could be based on a lack of understanding of the amount of risk conferred to family members by reported gene variants. Providing public discussions for placing these risks in perspective should be the responsibility of researchers. Open public discussion of the ethical and social uses of the information gained from psychiatric genetic research and its limitations is encouraged. (C) 2005 Wiley-Liss, Inc.