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Reciprocity in Population Biobanks
Relational Autonomy and the Duty to Inform in the Genomic Era
- 1st Edition - September 22, 2021
- Author: Ma’n H. Zawati
- Language: English
- Paperback ISBN:9 7 8 - 0 - 3 2 3 - 9 1 2 8 6 - 0
- eBook ISBN:9 7 8 - 0 - 3 2 3 - 9 1 3 4 8 - 5
Reciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era begins by discussing how current judicial interpretation keeps standard of disclo… Read more
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Request a sales quoteReciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era begins by discussing how current judicial interpretation keeps standard of disclosure at the core of genomic research. The book then outlines multiple limitations individualistic autonomy faces in the context of gene and population biobanks, including an analysis of the complexities of benefit considerations in the research setting. Second, the book explores how individualistic autonomy fails to acknowledge the multilateral relationships implicated in genomic research, including those that affect the broader research community, research participants’ families, and the general public.
In carrying out this analysis, this book pays special attention to alternative approaches and ways researchers, public health officials, and judicial bodies might interact in years to come. In other words, implementing an understanding of relational autonomy that acknowledges and sustains the multilateral relationships found in genomic research without compromising the rights of participants. In short, this book proposes a reconceived duty to inform for researchers and a new standard of disclosure that is more meaningful and impactful for research participants and researchers.
- Examines the limitations individualistic autonomy faces in the context of gene and population biobanks
- Proposes a reconceived duty to inform for researchers and a new standard of disclosure more meaningful to genomic research participants
- Suggests ways researchers, public health officials, and judicial bodies might interact to drive genomic research while still protecting research participants
Human geneticists, genomicists, public health administrators, policy and legal experts, informaticists, medical geneticists, and genetic counselors. Students and clinicians across biochemical, public health, and social sciences
- Cover image
- Title page
- Table of Contents
- Copyright
- Dedication
- Preface
- Acknowledgments
- General introduction
- Book structure
- Chapter 1. From paternalism to the individualistic conception of autonomy: a brief overview of the evolution of the medical duty to inform in the 20th century
- 1.1. Introduction
- 1.2. From paternalism to the principle of respect for autonomy
- 1.3. Medical duty to inform: characteristics in the clinical and the nontherapeutic research settings
- 1.4. Origins of the conception of autonomy in Halushka and Weiss
- 1.5. Conclusion
- Chapter 2. Characteristics of population biobanks
- 2.1. Introduction
- 2.2. Presentation of population biobanks
- 2.3. Project of the public, by the public, for the public
- 2.4. Established to supply data and samples for future research projects
- 2.5. Linked with administrative health data
- 2.6. Organized and searchable collection
- 2.7. Conclusion
- Chapter 3. The duty to inform of researchers in population biobanks
- 3.1. Introduction
- 3.2. Methodology
- 3.3. International documents
- 3.4. Regional documents
- 3.5. National documents
- 3.6. Limitations to the duty to inform in the context of population biobanks
- 3.7. Conclusion
- Chapter 4. Limitations of the individualistic conception of autonomy in population biobanking
- 4.1. Limitations of the individualistic conception of autonomy: an introduction
- 4.2. The concept of benefit: moving beyond individual participants
- 4.3. Proposed solutions and their limitations for population biobanks
- 4.4. Conclusion
- Chapter 5. The concept of reciprocity: origins and key elements
- 5.1. Introduction
- 5.2. Key elements of the concept of reciprocity: donors and recipients
- 5.3. Two conceptions: reciprocity for mutual benefit and reciprocity for mutual respect
- 5.4. Nature of the reciprocal exchanges
- 5.5. Scope of reciprocal exchanges
- 5.6. Flow of reciprocal exchanges
- 5.7. Value of reciprocal exchanges
- 5.8. Conclusion
- Chapter 6. Toward a reciprocity-based relational autonomy for population biobanks: advantages and limitations
- 6.1. Introduction
- 6.2. The concept of reciprocity as portrayed in biobank literature
- 6.3. Reciprocity-based relational autonomy for population biobanks or the importance of considering all stakeholders
- 6.4. Reciprocity-based relational autonomy in population biobanks: how does it affect the disclosure of information to participants?
- 6.5. Respecting a reciprocity-based relational autonomy in the disclosure of information to participants: advantages and limitations
- 6.6. Conclusion
- General conclusion
- Bibliography
- Index
- No. of pages: 202
- Language: English
- Edition: 1
- Published: September 22, 2021
- Imprint: Academic Press
- Paperback ISBN: 9780323912860
- eBook ISBN: 9780323913485
MZ
Ma’n H. Zawati
Ma’n H. Zawati (LL.B., LL.M., Ph.D. (DCL)) is an Assistant Professor at McGill University’s Faculty of Medicine and the Executive Director of the Centre of Genomics and Policy in the Department of Human Genetics. He is also an Associate Member of McGill’s Biomedical Ethics Unit. His research concentrates on the legal, ethical and policy dimensions of health research and clinical care, with a special focus on biobanking, data sharing, professional liability, and the use of novel technologies (e.g. mhealth apps, WGS, WES) in both the clinical and research settings. Dr. Zawati is funded by CIHR, Genome Canada, and Genome Quebec. His work is interdisciplinary, drawing together perspectives from law, ethics, bioinformatics, genomics, and policy. He’s also a frequent presenter on a variety of the most critical and topical issues in healthcare and the biosciences. He has appeared at 100+ international conferences, symposia, meetings, and has shared his expertise with universities, research ethics boards and law firms. Dr. Zawati has published 13 book chapters and 45+ peer reviewed articles in leading publications such as Nature Reviews Genetics, the Canadian Medical Association Journal, the Journal of Law and the Biosciences, the Journal of Medical Genetics, and the McGill Journal of Law and Health. In 2015, he was awarded the Queen Elizabeth II Diamond Jubilee Scholarship (stay at Oxford University) and was named a Royal Society of Canada Delegate for the IAP Young Scientists of the Year international symposium. In 2014, the Young Bar Association of Montreal named him as one of its Lawyers of the Year.
Affiliations and expertise
Assistant Professor, McGill University's Faculty of Medicine and Executive Director, Centre of Genomics and Policy, Department of Human Genetics, Montreal, CanadaRead Reciprocity in Population Biobanks on ScienceDirect