April 26, 2024

   Le Centre Sheraton Montreal Hotel
   9am - 5pm EDT

HGSS 2024 Conference: Genomic Medicine For All

December 11, 2023

   Panama City, Panama
   all day

The GDOs 4th Annual Scientific Meeting

The meeting will bring together expert members of the Genetic Discrimination Observatory (GDO) and aims to provide a forum for discuss findings on genetic discrimination, provide an update on the GDOs activities to date, and establish a collaborative agenda for next year.

December 06, 2023

   Online
   10:00AM - 11:00AM

HGSS Seminar Series : DNA DIALOGUES

Speakers

Prof. Bartha Maria Knoppers

Topic: “Ethico-Legal ‘Futures’ in Genomic Medicine”

Ana Bonilha (Genetic Counselling Student)

Topic: “Baby Steps Towards Newborn Genome Sequencing”

November 07, 2023

   McGill University – Genome Centre Room 6001
   1PM – 2PM

Genomic Research on Indigenous Peoples: The Landscape in Japan

Invited Speaker: Momoko Sato

Research Associate, RIKEN Centre for the Integrative Medical Sciences

HaploTalks special seminar on “Genomic Research on Indigenous Peoples: The Landscape in Japan”

Scientific research on Indigenous people has a long history of disregarding the rights and interests of subjects. In Japan, past excavations of Ainu human remains have been condemned, but Japanese regulations have not recognized the need to address ethnic minorities. Therefore, the Ainu Association of Hokkaido and three anthropology and archaeology academic societies recently established the draft Ethical Guidelines for Research on Ainu People. 

In this presentation, Momoko Sato outlines the draft guidelines’ background, contributions, and limitations. According to the draft guidelines, a research ethics committee will be established to make decisions on conducting individual studies. Although important components of community-based research, such as the dissemination of research findings, were addressed, it remains critical to monitor research practices as the draft guidelines may not cover every related study.

October 23, 2023

   McGill University – Genome Centre Room 6001
   12PM - 1PM

Regulating Generative AI in Health and Health Research

Invited Speaker: Dr. Calvin Ho

Associate Professor, University of Hong Kong
Co-Director, Centre for Medical Ethics

HaploTalks special seminar on “Regulating Generative AI in Health and Health Research”

As a sociotechnical system, ChatGPT and other types of generative AI are not normatively neutral in their design, and their use in clinical medicine could have profound normative implications that are independent of the direct impact on human health and wellbeing. With reference to recent regulatory developments in China and in the European Union, I provide three reasons why the clinical use of generative AI needs to be subject to regulation. First, normative requirements that are not backed by law / regulation may not adequately address the impact that power dynamics and systemic biases have in knowledge production and dissemination. Marginalized individuals and communities still lack the capability to participate in knowledge production and decision-making processes, even if well formulated informed consent procedures are in place. Second, there may be a disconnect between AI developers / implementers and the lived experiences of individuals and communities, since the former often do not actively seek out diverse perspectives and marginalized voices in knowledge production. Third, regulation could better facilitate collaboration across different knowledge systems, including bioethics and human rights.

October 16, 2023

   McGill University - McIntyre Building, Charles Martin Amphitheatre Room 504
   11:45AM - 1PM

The Bartha Maria Knoppers Inaugural Lecture 2023

Invited Speaker: Dr. Eric M. Meslin

(PhD, FRSC, FCAHS)
President and CEO, Council of Canadian Academies
Visiting Scholar, Centre of Genomics and Policy, McGill University

Talk on “Policy as an International Language in Bioethics: What We Can Learn from Genomics”

Galileo is to have said “Mathematics is the language in which God has written the universe”. Referring to DNA, Francis Collins’ books The Language of God and Language of Life offer similarly grand proclamations. Such sentiments also reflect the practical goal that mutual understanding between different groups can overcome differences. This lecture offers a modest proposal in this same spirit: as genomic technology circumnavigates the planet, deciding how to promote its benefits while cautioning against its risks requires more than a common understanding of the technology or its ethical, legal, and social implications. The choice of policy tool is itself an object of conversation and debate. Using examples from the recent history of genomics, I will discuss some of the implications for elevating policy to this status and what work remains to be done for it to succeed.