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2016 ; 18
(7
): 705-11
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gab.com Text
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English Wikipedia
Institutional review board perspectives on obligations to disclose genetic
incidental findings to research participants
#MMPMID26583685
Gliwa C
; Yurkiewicz IR
; Lehmann LS
; Hull SC
; Jones N
; Berkman BE
Genet Med
2016[Jul]; 18
(7
): 705-11
PMID26583685
show ga
PURPOSE: Researchers' obligations to disclose genetic incidental findings (GIFs)
have been widely debated, but there has been little empirical study of the
engagement of institutional review boards (IRBs) with this issue. METHODS: This
article presents data from the first extensive (n = 796) national survey of IRB
professionals' understanding of, experience with, and beliefs surrounding GIFs.
RESULTS: Most respondents had dealt with questions about GIFs (74%), but only a
minority (47%) felt prepared to address them. Although a majority believed that
there is an obligation to disclose GIFs (78%), there is still not consensus about
the supporting ethical principles. Respondents generally did not endorse the idea
that researchers' additional time and effort (7%), and lack of resources (29%),
were valid reasons for diminishing a putative obligation. Most (96%) supported a
right not to know, but this view became less pronounced (63%) when framed in
terms of specific case studies. CONCLUSIONS: IRBs are actively engaged with GIFs
but have not yet reached consensus. Respondents were uncomfortable with arguments
that could be used to limit an obligation to return GIFs. This could indicate
that IRBs are providing some of the impetus for the trend toward returning GIFs,
although questions remain about the relative contribution of other
stakeholders.Genet Med 18 7, 705-711.