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Published on: November 30, 2022
Comparative Approaches to Biobanks and Privacy
Mark A Rothstein1, Bartha Maria Knoppers1, Heather L Harrell1
1Mark A. Rothstein, J.D., is the Herbert F. Boehl Chair of Law and Medicine, and Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. Bartha Maria Knoppers, Ph.D., is a Professor of Medicine and Director of the Centre of Genomics and Policy at McGill University. Heather L. Harrell, M.D., J.D., is a Research Professor at the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine.
Privacy laws across 20 jurisdictions show similar approaches to biobank research, with most using controlled access systems. Harmonizing these intricate privacy laws is crucial for international biobanking collaborations.
Area of Science:
- Biobanking and Privacy Law
- Genomic Research Ethics
- International Health Regulations
Background:
- Biobanking research is rapidly expanding globally.
- Existing legal frameworks often address biobanking indirectly.
- Privacy protection in biobank research presents complex challenges.
Purpose of the Study:
- To analyze and compare privacy law approaches in biobank research across 20 jurisdictions.
- To identify commonalities and differences in legal protections for biobank specimens.
- To explore the impact of privacy laws on international data sharing and collaboration.
Main Methods:
- Comparative legal analysis of legislation in 20 jurisdictions.
- Review of existing biobanking and privacy laws.
- Examination of oversight mechanisms and consent models.
Main Results:
- Most jurisdictions employ controlled access systems for biobank specimens.
- Broad consent models are adopted slowly, particularly in countries without national biobanks.
- International sharing is guided by specific provisions, with some jurisdictions imposing limitations.
- Privacy laws, while not prohibiting international collaborations, complicate them due to jurisdictional variations.
Conclusions:
- Despite variations, a general trend towards privacy protection in biobank research is evident.
- Harmonization of privacy laws is essential to facilitate international biobanking research and data sharing.
- A framework for harmonizing privacy laws can aid in navigating complex international collaborations.
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