作者
Michael P Mackley, Benjamin Fletcher, Michael Parker, Hugh Watkins, Elizabeth Ormondroyd
发表日期
2017/3/1
来源
Genetics in Medicine
卷号
19
期号
3
页码范围
283-293
出版商
Elsevier
简介
Purpose
As whole-exome sequencing (WES) and whole-genome sequencing (WGS) move into routine clinical practice, it is timely to review data that might inform the debate regarding secondary findings (SF) and the development of policies that maximize participant benefit.
Methods
We systematically searched for qualitative and quantitative studies that explored stakeholder views on SF in WES/WGS. Framework analysis was undertaken to identify major themes.
Results
Forty-four articles reporting the views of 11,566 stakeholders were included. Stakeholders were broadly supportive of returning “actionable” findings, but definitions of actionability varied. Stakeholder views on SF disclosure exist along a spectrum: potential WES/WGS recipients’ views were largely influenced by a sense of rights, whereas views of genomics professionals were informed by a sense of professional responsibility. Experience with …
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