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Returning genome sequences to research participants: Policy and practice
Caroline F Wright1, Anna Middleton1, Jeffrey C Barrett1
1Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UK.
Wellcome Open Research
|March 21, 2017
Summary
Returning entire genome sequences to research participants presents logistical and ethical challenges. Careful planning and governance are essential for responsible data sharing in translational genomics.
Area of Science:
- Genomic science
- Translational research
- Bioethics
Background:
- Genomic science advances have increased literature on returning health-related findings.
- Returning entire genome sequences to participants is less explored.
Purpose of the Study:
- To identify logistical and ethico-legal challenges of returning individual genome sequences.
- To provide pragmatic suggestions for studies considering genomic data sharing.
Main Methods:
- Direct involvement in large-scale translational genomics studies.
- Identification and analysis of logistical and ethico-legal issues.
Main Results:
- Key logistical challenges include data verification and informatics support.
- Ethico-legal issues encompass family data return, unintended consequences, and governance.
- Pragmatic suggestions are offered for genomic data sharing.
Conclusions:
- Sharing individual genome sequences requires careful consideration of practical and ethical implications.
- Further research is needed on the personal, familial, and societal impact of receiving genome data.
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