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Returning genetic research results to individuals: points-to-consider
Gaile Renegar1, Christopher J Webster, Steffen Stuerzebecher
1Genetics Research, GlaxoSmithKline, 5 Moore Drive, RTP NC 27709, USA. gaile.l.regenar@gsk.com
Bioethics
|May 10, 2006
Summary
Returning individual genetic research results to participants is debated. This paper offers considerations for drug development trials, balancing participant benefits and risks.
Area of Science:
- Genetics
- Bioethics
- Pharmacogenomics
Background:
- Growing prevalence of pharmacogenetics and disease genetics research.
- Increasing trend for participants to access personal genetic data.
- Ethico-legal guidelines and public policy in Europe and the US reviewed.
Purpose of the Study:
- Stimulate debate on returning individual genetic research results.
- Provide 'Points-to-Consider' for drug development trials.
- Frame discussion as a benefit-to-risk assessment for participants.
Main Methods:
- Review of international ethico-legal guidelines and public policy.
- Discussion based on authors' knowledge and experience in genetic research.
- Analysis of considerations for returning genetic research results.
Main Results:
- Exploratory genetic data is common, but participant access is increasing.
- Key considerations include clinical relevance, lab qualifications, consent, confidentiality, and competency.
- A benefit-to-risk framework is proposed for decision-making.
Conclusions:
- Careful consideration is needed for returning individual genetic research results.
- Balancing potential benefits and risks to participants is crucial.
- Maintaining research integrity and feasibility is essential.
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