April 9, 2019 @ 5:30 pm – 8:00 pm
The Project Room 1.06 (1st Floor), 50 George Square, The University of Edinburgh, EH8 9JU

We will hold our MI Annual Lecture with a lecture from Professor Bartha Maria Knoppers, from McGill University in Montreal, Canada.

The lecture will be followed by a drinks reception.

‘Realizing the Right to Benefit from Science’

“[Everyone has] the right to enjoy the benefits of scientific progress and its applications.” (Art. 15(1)(b)), International Covenant on Economic, Social and Cultural Rights (ICESCR), 1966.

To date, 169 states have signed and ratified the ICESCR.  More than fifty years since its adoption by the United Nations General Assembly, and despite its legal actionability, governments on the whole have failed to adopt measures to respect a specific social and cultural right within the Covenant, namely “the right of everyone to enjoy the benefits of science progress and its applications”.  This right, in other words, largely has been dormant.    This lecture will examine the interrelated sets of rights found within ICESCR’s article 15: “the right to benefit from”, the right of scientific freedom, and the duty of states to provide an enabling environment whereby scientific progress and its applications will be fully realized.  With respect to data intensive science and human germline engineering, for example, the possible regulatory routes and content of the right to benefit from science are varied; what are and might be suitable approaches?

The need to awaken this “Cinderella” right remains.

About the Speaker:

Bartha Maria Knoppers, PhD (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill University. She is Chair of the Ethics and Governance Committee of the International Cancer Genome Consortium (2009-2017), as well as the Ethics Advisory Panel of WADA (2015- ). She is Co-Chair of the Regulatory and Ethics Workstream of the Global Alliance for Genomics and Health (2013- ). In 2015-2016, she was a member of the Drafting Group for the Recommendation of the OECD Council on Health Data Governance and gave The Galton Lecture in November 2017. She holds four Doctorates Honoris Causa and is a Fellow of the American Association for the Advancement of Science (AAAS), the Hastings Center (bioethics), the Canadian Academy Health Sciences (CAHS), and, the Royal Society of Canada. She is also an Officer of the Order of Canada and of Quebec.

Mason Institute Annual Lecture