Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing.
Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing.
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DOI：
10.1007/s10897-016-9987-0
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发表时间：
2017-02
影响因子：
1.9
通讯作者：
De Vries, Raymond G.
中科院分区：
文献类型：
--
作者：
Gornick, Michele C.;Scherer, Aaron M.;Sutton, Erica J.;Ryan, Kerry A.;Exe, Nicole L.;Li, Ming;Uhlmann, Wendy R.;Kim, Scott Y. H.;Roberts, J. Scott;De Vries, Raymond G.
基因组测序在临床诊断和治疗中的使用越来越多，因此必须制定关于如何处理次要发现的指导方针和政策。出于实际和道德方面的原因，这些准则的制定必须考虑到普通公众的知情意见。作为一个更大的临床测序探索性研究（CSER）联盟项目的一部分，我们组织了一个协商民主（DD）会议，让66名参与者就临床基因组测序次要结果返回相关的益处和风险进行对话。与会者接受了关于医学遗传学和生物伦理学专家披露次要发现的科学和伦理方面的教育，然后参与了关于披露三种次要发现的政策选择的促进讨论：1）医学上可采取行动的结果; 2）在儿童中发现的成人发病性疾病; 3）携带者状况。通过DD会议前一个月、紧接其后和一个月后进行的调查收集了参与者的意见。DD会议后，参与者明显更愿意支持不允许获得与儿童成人发病条件相关的次要结果的政策（2012（2，N = 62）= 13.300，p = 0.001）或携带者状态（2012（2，N = 60）= 11.375，p = 0.003）。一个月后，对拒绝获得关于成人发病条件的次要发现的政策的支持水平仍然显著高于DD前的水平，尽管低于DD后的水平（102（1，N = 60）= 2.465，p = 0.041）。我们的研究结果表明，教育和审议提高了公众对基因组测序的科学和伦理复杂性的认识。
The increased use of genomic sequencing in clinical diagnostics and therapeutics makes imperative the development of guidelines and policies about how to handle secondary findings. For reasons both practical and ethical, the creation of these guidelines must take into consideration the informed opinions of the lay public. As part of a larger Clinical Sequencing Exploratory Research (CSER) consortium project, we organized a deliberative democracy (DD) session that engaged 66 participants in dialogue about the benefits and risks associated with the return of secondary findings from clinical genomic sequencing. Participants were educated about the scientific and ethical aspects of the disclosure of secondary findings by experts in medical genetics and bioethics, and then engaged in facilitated discussion of policy options for the disclosure of three types of secondary findings: 1) medically actionable results; 2) adult onset disorders found in children; and 3) carrier status. Participants’ opinions were collected via surveys administered one month before, immediately following, and one month after the DD session. Post DD session, participants were significantly more willing to support policies that do not allow access to secondary findings related to adult onset conditions in children (Χ2 (2, N = 62) = 13.300, p = 0.001) or carrier status (Χ2 (2, N = 60) = 11.375, p = 0.003). After one month, the level of support for the policy denying access to secondary findings regarding adult-onset conditions remained significantly higher than the pre-DD level, although less than immediately post-DD (Χ2 (1, N = 60) = 2.465, p = 0.041). Our findings suggest that education and deliberation enhance public appreciation of the scientific and ethical complexities of genome sequencing.
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DOI：
10.1038/gim.2011.68
发表时间：
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期刊：
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发表时间：
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期刊：
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影响因子：
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通讯作者：
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影响因子：
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通讯作者：
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