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A trade secret model for genomic biobanking
John M Conley1, Robert Mitchell, R Jean Cadigan
1University of North Carolina at Chapel Hill.
Summary
Genomic biobanks face unique ethical issues with informed consent. A new model, inspired by research participants, uses a "trade secret" concept for DNA data, improving ethical and practical aspects.
Area of Science:
- Bioethics
- Genomics
- Informed Consent
Background:
- Genomic biobanks present unprecedented ethical challenges.
- Current informed consent models are questioned for genomic biobanking.
- Existing reform proposals often involve incremental changes.
Purpose of the Study:
- To explore novel approaches to informed consent in genomic biobanking.
- To gather insights directly from research subjects regarding their concerns.
- To develop an improved biobanking model based on participant perspectives.
Main Methods:
- Conducted semi-structured interviews with healthy volunteers participating in or considering biobank enrollment.
- Encouraged participants to articulate their understanding of DNA information and specimen contributor relationships.
- Analyzed participant perspectives for novel conceptual frameworks applicable to biobanking.
Main Results:
- Participants conceptualized their DNA and its information akin to legal "trade secrets".
- Participants described potential licensing terms for studying their DNA, analogous to trade secret licensing.
- A novel biobanking model emerged from participant-driven insights.
Conclusions:
- A biobanking model based on the "trade secret" concept offers a practical, legal, and ethical improvement.
- This participant-centered approach addresses the limitations of traditional informed consent in genomics.
- The proposed model enhances the ethical framework for genomic biobanking and participant engagement.
