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DTSTAMP:20250824T065427Z
DESCRIPTION:We invite you to join 9I���������’s Research Group on Health Law (RG
 HL) in welcoming Dr. Bartha Maria Knoppers\, full professor\, Canadian Res
 earch Chair in Law and Medicine\, and the Director of the Centre of Genomi
 cs and Policy\, as a speaker at the annual conference of the RGHL. Her pre
 sentation is entitled\, 'Tomorrow's Biolaw: Judicial Plasticity and Digita
 l Complexity?'\n\nAbstract\n\nFrom the Hippocratic oath to the Nuremberg C
 ode\, the Declaration of Helsinki\, and the Universal Declaration on Bioet
 hics and Human Rights\, biomedical advances have been filtered through and
  interpreted against these ethical norms. Moreover\, the focus of scientif
 ic research has moved beyond individuals\, clinical trials\, and rare dise
 ases 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 inte
 rnational mapping of the human genome\, to national biobanks and populatio
 n studies that serve as resources for future unspecified research for othe
 rs. Indeed\, alongside traditional discovery science has emerged a new inf
 rastructure science. Yet\, also percolating are bioengineering\, gene edit
 ing and regenerative medicine efforts that challenge classical legal duali
 sms and divides such as person-property\, animal-human\, or living-dead. H
 ow plastic is or will be the framing of the “legal” human?\n\nParallel to 
 the legal challenges raised by this new biology and infrastructure science
  are those of information technologies and their ensuing probabilistic\, d
 igital complexity. Stratification based on population data may well serve 
 to ensure targeted resource allocation and thus rescue the ongoing sustain
 ability 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 an
 cestries and of human diversity are equally harmful. Contribution by all c
 itizens to variant databases is essential to their use in diagnoses and in
 terpretation but where and on whom does the responsibility to contribute o
 ne’s health data to ensure quality and safety lie? Quid\, the algorithms t
 hat 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 confi
 dentiality. Data may be the new prevention\, the new treatment\, but can w
 e accept its dynamic\, complex and “epigenetic” nature?\n\nBio\n\nBartha M
 aria Knoppers\, PhD (Comparative Medical Law) is Full Professor\, Canada R
 esearch Chair in Law and Medicine\, Director of the Centre of Genomics and
  Policy\, Faculty of Medicine and Health Sciences at 9I���������. Sh
 e was the Chair of the Ethics and Governance Committee of the Internationa
 l Cancer Genome Consortium (2009-2017) and Co-Chair of the Regulatory and 
 Ethics Workstream of the Global Alliance for Genomics and Health (2013-201
 9).  She also helped draft the OECD Recommendation on Health Data Governan
 ce (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 Lif
 etime Achievement Award\, Canadian Bioethics Society (2021).\n\nUne attest
 ation de participation sera remise sur demande aux membres du Barreau du Q
 uébec et de la Chambre des notaires.\n\nPlaces are limited. Please confirm
  your presence by filling out this form.\n
DTSTART:20220119T211500Z
DTEND:20220119T224500Z
LOCATION:Moot Court (NCDH Room 100)
SUMMARY:Tomorrow’s Biolaw: Judicial Plasticity and Digital Complexity?
URL:/law/fr/channels/event/tomorrows-biolaw-judicial-p
 lasticity-and-digital-complexity-344203
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