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Incidental findings in genetics research using archived DNA
1Center for Biomedical Ethics and Society, Vanderbilt University, TN, USA.
Summary
Genetic research may uncover incidental findings, but caution is advised due to lack of consent and potential for unexpected results. Disclosure should only occur when the findings have very high utility.
Area of Science:
- Genetics
- Bioethics
- Research Ethics
Background:
- Genetics research can yield incidental findings beyond the original scope.
- Disclosure of these findings is debated among commentators.
- Participants may not be aware research is being conducted, especially when consent is not obtained.
Purpose of the Study:
- To explore the arguments for and against disclosing incidental findings in genetics research.
- To evaluate the ethical considerations surrounding incidental findings.
- To provide guidance on the disclosure of incidental findings in genetic studies.
Main Methods:
- Literature review of ethical arguments and historical practices in genetics research.
- Analysis of the implications of consent in genetics research.
- Discussion of the potential utility versus risk of incidental findings.
Main Results:
- A significant argument against disclosure is the lack of explicit consent for uncovering incidental findings.
- Historical practices in genetics research have generally favored non-disclosure of incidental findings.
- The potential for "unwanted surprise" necessitates high utility for offering incidental findings.
Conclusions:
- Caution is warranted regarding the disclosure of incidental findings in genetics research.
- The decision to disclose should carefully weigh the potential benefits against the risks, especially when consent is not comprehensive.
- Incidental findings should only be offered if their utility is exceptionally high.
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