Tomorrow’s Biolaw: Judicial Plasticity and Digital Complexity?
Presented by Dr. Bartha Maria Knoppers, full professor, Canadian Research Chair in Law and Medicine, and Director of the Centre of Genomics and Policy
From the Hippocratic oath to the Nuremberg Code, the Declaration of Helsinki, and the Universal Declaration on Bioethics and Human Rights, biomedical advances have been filtered through and interpreted against these ethical norms. Moreover, the focus of scientific research has moved beyond individuals, clinical trials, and rare diseases to also include whole populations and communities under the banner of serving group interests and to better understand the evolution and future our human species. Citizens are being asked to contribute to ongoing international mapping of the human genome, to national biobanks and population studies that serve as resources for future unspecified research for others. Indeed, alongside traditional discovery science has emerged a new infrastructure science. Yet, also percolating are bioengineering, gene editing and regenerative medicine efforts that challenge classical legal dualisms and divides such as person-property, animal-human, or living-dead. How plastic is or will be the framing of the “legal” human?
Parallel to the legal challenges raised by this new biology and infrastructure science are those of information technologies and their ensuing probabilistic, digital complexity. Stratification based on population data may well serve to ensure targeted resource allocation and thus rescue the ongoing sustainability of our universal health care systems, but currently, the use of polygenic risk scores may be misleading. Moreover, treatments, drugs and devices premised on databases that are not representative of different ancestries and of human diversity are equally harmful. Contribution by all citizens to variant databases is essential to their use in diagnoses and interpretation but where and on whom does the responsibility to contribute one’s health data to ensure quality and safety lie? Quid, the algorithms that feed m-health and medical devices? Finally, clinical genomic testing is already in use in the health care setting in some countries but raises the issue of potential duties to family members and data privacy and confidentiality. Data may be the new prevention, the new treatment, but can we accept its dynamic, complex and “epigenetic” nature?
Dr. Bartha Maria Knoppers, PhD (Comparative Medical Law) is Full Professor, Canada Research Chair in Law and Medicine, Director of the Centre of Genomics and Policy, Faculty of Medicine and Health Sciences at McGill University. She was the Chair of the Ethics and Governance Committee of the International Cancer Genome Consortium (2009-2017) and Co-Chair of the Regulatory and Ethics Workstream of the Global Alliance for Genomics and Health (2013-2019). She also helped draft the OECD Recommendation on Health Data Governance (2017), was appointed to the International Commission on the Clinical Use of Human Germline Genome Editing (2020), and currently co-chairs the Ethics Working Group of the Human Cell Atlas (2018-2022). She holds four Doctorates Honoris Causa and is a Fellow of the AAAS, the Hastings Center of Bioethics, the Canadian Academy Health Sciences and the Royal Society of Canada. She is an Officer of the Order of Canada and of Quebec, and recipient of the Henry G. Friesen International Prize in Health Research (2019), the Till and McCulloch Award for Science Policy (2020) and the Lifetime Achievement Award, Canadian Bioethics Society (2021).