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UID:20250312T174230EDT-9219RMTrBN@132.216.98.100
DTSTAMP:20250312T214230Z
DESCRIPTION:Presented by Dr. Bartha Maria Knoppers\, full professor\, Canad
 ian Research Chair in Law and Medicine\, and Director of the Centre of Gen
 omics and Policy\n\nAbout\n\nFrom the Hippocratic oath to the Nuremberg Co
 de\, the Declaration of Helsinki\, and the Universal Declaration on Bioeth
 ics and Human Rights\, biomedical advances have been filtered through and 
 interpreted against these ethical norms. Moreover\, the focus of scientifi
 c research has moved beyond individuals\, clinical trials\, and rare disea
 ses 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 inter
 national mapping of the human genome\, to national biobanks and population
  studies that serve as resources for future unspecified research for other
 s. Indeed\, alongside traditional discovery science has emerged a new infr
 astructure science. Yet\, also percolating are bioengineering\, gene editi
 ng and regenerative medicine efforts that challenge classical legal dualis
 ms and divides such as person-property\, animal-human\, or living-dead. Ho
 w plastic is or will be the framing of the “legal” human?\n\nParallel to t
 he legal challenges raised by this new biology and infrastructure science 
 are those of information technologies and their ensuing probabilistic\, di
 gital complexity. Stratification based on population data may well serve t
 o ensure targeted resource allocation and thus rescue the ongoing sustaina
 bility of our universal health care systems\, but currently\, the use of p
 olygenic risk scores may be misleading. Moreover\, treatments\, drugs and 
 devices premised on databases that are not representative of different anc
 estries and of human diversity are equally harmful. Contribution by all ci
 tizens to variant databases is essential to their use in diagnoses and int
 erpretation but where and on whom does the responsibility to contribute on
 e’s health data to ensure quality and safety lie? Quid\, the algorithms th
 at feed m-health and medical devices? Finally\, clinical genomic testing i
 s already in use in the health care setting in some countries but raises t
 he issue of potential duties to family members and data privacy and confid
 entiality. Data may be the new prevention\, the new treatment\, but can we
  accept its dynamic\, complex and “epigenetic” nature?\n\nBio\n\nDr. Barth
 a Maria Knoppers\, PhD (Comparative Medical Law) is Full Professor\, Canad
 a Research Chair in Law and Medicine\, Director of the Centre of Genomics 
 and Policy\, Faculty of Medicine and Health Sciences at 9I���������.
  She was the Chair of the Ethics and Governance Committee of the Internati
 onal Cancer Genome Consortium (2009-2017) and Co-Chair of the Regulatory a
 nd Ethics Workstream of the Global Alliance for Genomics and Health (2013-
 2019). She also helped draft the OECD Recommendation on Health Data Govern
 ance (2017)\, was appointed to the International Commission on the Clinica
 l Use of Human Germline Genome Editing (2020)\, and currently co-chairs th
 e 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 Cente
 r of Bioethics\, the Canadian Academy Health Sciences and the Royal Societ
 y 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 Lif
 etime Achievement Award\, Canadian Bioethics Society (2021).\n\nRegistrati
 on link | Facebook event\n
DTSTART:20230119T211500Z
DTEND:20230119T224500Z
LOCATION:Moot Court (NCDH Room 100)\, 3660 Peel Street
SUMMARY:Tomorrow’s Biolaw: Judicial Plasticity and Digital Complexity?
URL:/law/fr/channels/event/tomorrows-biolaw-judicial-p
 lasticity-and-digital-complexity-344747
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