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2016 ; 24
(1
): 21-9
Nephropedia Template TP
gab.com Text
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English Wikipedia
Attitudes of nearly 7000 health professionals, genomic researchers and publics
toward the return of incidental results from sequencing research
#MMPMID25920556
Middleton A
; Morley KI
; Bragin E
; Firth HV
; Hurles ME
; Wright CF
; Parker M
Eur J Hum Genet
2016[Jan]; 24
(1
): 21-9
PMID25920556
show ga
Genome-wide sequencing in a research setting has the potential to reveal
health-related information of personal or clinical utility for the study
participant. There is increasing pressure to return research findings to
participants that may not be related to the project aims, particularly when these
could be used to prevent disease. Such secondary, unsolicited or 'incidental
findings' (IFs) may be discovered unintentionally when interpreting sequence
data, or as the result of a deliberate opportunistic screen. This
cross-sectional, web-based survey investigated attitudes of 6944 individuals from
75 countries towards returning IFs from genome research. Participants included
four relevant stakeholder groups: 4961 members of the public, 533 genetic health
professionals, 843 non-genetic health professionals and 607 genomic researchers
who were invited via traditional media, social media and professional e-mail
list-serve. Treatability and perceived utility of incidental results were deemed
important with 98% of stakeholders personally interested in learning about
preventable life-threatening conditions. Although there was a generic interest in
receiving genomic information, stakeholders did not expect researchers to
opportunistically screen for IFs in a research setting. On many items, genetic
health professionals had significantly more conservative views compared with
other stakeholders. This finding demonstrates a disconnect between the views of
those handling the findings of research and those participating in research.
Exploring, evaluating and ultimately addressing this disconnect should form a
priority for researchers and clinicians alike. This social sciences study offers
the largest dataset, published to date, of attitudes towards issues surrounding
the return of IFs from sequencing research.