Age and perceived risks and benefits of preventive genomic screening.
Age and perceived risks and benefits of preventive genomic screening.
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DOI：
10.1038/gim.2017.206
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发表时间：
2018-09
期刊：
影响因子：
--
通讯作者：
Henderson GE
中科院分区：
文献类型：
--
作者：
Waltz M;Cadigan RJ;Prince AER;Skinner D;Henderson GE
随着基因组测序从研究走向临床实践，尽管缺乏风险和益处的系统性证据以及谁应该接受筛查的标准，但专注于“医学上可操作”目标的测序技术正在被推广用于预防性筛查。本研究调查了研究人员和研究参与者对预防性基因组筛查研究GeneScreen背景下这些问题的看法。我们记录了研究人员对年龄资格标准以及筛查风险和益处的审议，并对50名GeneScreen参与者进行了访谈，了解他们加入的动机以及对风险和益处的看法。研究人员根据年龄对谁想要并受益于筛查做出了假设。经过讨论，研究人员选择不设入学年龄上限。所有年龄段的参与者都感受到了类似的好处，包括预防，治疗和级联测试，以及类似的风险，如保险歧视和担忧。虽然老年人预防性基因组筛查的临床益处存在争议，但我们的受访者认为筛查在临床和研究环境中具有一系列益处。研究人员和临床医生应该仔细考虑排除老年人的决定，并提供有关各年龄组的益处和风险的信息。
As genome sequencing moves from research to clinical practice, sequencing technologies focused on “medically actionable” targets are being promoted for preventive screening despite the dearth of systematic evidence of risks and benefits and criteria for who should be screened. This study investigates researchers’ and research participants’ perceptions of these issues within the context of a preventive genomic screening study, GeneScreen. We recorded researcher deliberations regarding age eligibility criteria and the risks and benefits of screening, and conducted interviews with 50 GeneScreen participants about their motivations for joining and perceptions of risks and benefits. Researchers made assumptions about who would want and benefit from screening based on age. After discussion, researchers opted not to have an upper age limit for enrollment. Participants of all ages perceived similar benefits, including prevention, treatment, and cascade testing, and similar risks such as insurance discrimination and worry. While clinical benefits of preventive genomic screening for older adults are debatable, our respondents perceived a range of benefits of screening in both clinical and research settings. Researchers and clinicians should carefully consider decisions about excluding older adults and providing information about benefits and risks across age groups.
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DOI：
10.1080/15265161.2015.1039721
发表时间：
2015
期刊：
The American journal of bioethics : AJOB
影响因子：
--
作者：
Lázaro-Muñoz G;Conley JM;Davis AM;Van Riper M;Walker RL;Juengst ET
通讯作者：
Juengst ET
影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
影响因子：
3.7
作者：
Lewis KL;Han PK;Hooker GW;Klein WM;Biesecker LG;Biesecker BB
通讯作者：
Biesecker BB
影响因子：
8.8
作者：
Calonge, Ned;Fisher, Nancy L.;Veenstra, David L.
通讯作者：
Veenstra, David L.
影响因子：
6.3
作者：
Cruz-Jentoft, Alfonso J.;Carpena-Ruiz, Marina;Sanchez-Garcia, Elisabet
通讯作者：
Sanchez-Garcia, Elisabet