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首页> 外文期刊>Journal of empirical research on human research ethics : >Research participants' perspectives on genotype-driven research recruitment
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Research participants' perspectives on genotype-driven research recruitment

机译：研究参与者对基因型驱动的研究招募的观点

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摘要

genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotypedriven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, "information is valuable," and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.
机译：基因型驱动的招募是研究人类遗传变异的潜在强大方法，但提出了道德挑战。我们对发生这种招募的六项研究中的研究参与者进行了深入采访。几乎所有人都对重新接触对于研究招募的可接受性做出了积极回应，而基因型驱动的招募被视为科学进步的积极标志。关于公开单个基因研究结果的问题的反应各不相同。共同主题包括解释重新联系的目的，就进一步参与，互惠，“信息是有价值的”提供决策信息，受益的可能性以及对不当困扰和误解的担忧。我们的调查结果表明，如果涉及已知要素（例如，受信任的研究人员），则与其他研究的联系可能最少。同样，对于基因型驱动的募集，将个体结果披露的门槛设定为比更普遍建议的临床效用阈值低的标准是合适的。

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