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DNA data sharing: research participants' perspectives
Amy L McGuire1, Jennifer A Hamilton, Rebecca Lunstroth
1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA. amcguire@bcm.edu
Summary
Participants in genetic studies want to be informed about data sharing and prefer fewer options for consent. Explicit consent is crucial for public release of genomic information from existing samples.
Area of Science:
- Genomics
- Bioethics
- Informed Consent
Background:
- Current genomic research policies mandate public data release with specific consent.
- Informed consent processes often lack details on data sharing, necessitating model language.
- Participant attitudes and judgments are vital for developing effective data sharing consent.
Purpose of the Study:
- To describe research participants' attitudes and judgments regarding genomic data release.
- To understand participant preferences for control over data sharing decision-making.
Main Methods:
- Focus group sessions conducted with patients and controls.
- Participants were drawn from a genetic study focused on epilepsy.
Main Results:
- Participants generally desired information and decision-making control over data sharing.
- Fewer data sharing options increased the likelihood of consent for public release.
- Most participants believed explicit consent was necessary for public release of genomic information from existing samples.
Conclusions:
- Informed consent for genetic research must include specific details on data sharing.
- While participants prefer multiple release options, the impact on public release consent requires further study.
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