Academic Press Reciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era

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 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. Review Examines current practice around duty to inform in genomic research, offering a new framework for standard of disclosure for research participants From the Back Cover 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 disclosure at the core of genomic research. It 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, mainly, by 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. About the Author 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