Professor Bartha Knoppers, Canada

LML Visiting Scholar

July 2016, with additional research visits in 2017 and 2018.

Background 

Professor Knoppers is the Director of the Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Canada Research Chair in Law and Medicine 2001- and the holder of Chaire d’excellence Pierre Fermat (France) (2006-2008), she was named Distinguished Visiting Scientist (Netherlands Genomics Initiative) (2009-2012).

Professor Knoppers is internationally renowned in the interdisciplinary issues surrounding genomic technology and has written extensively on these issues. A list of Professor Knoppers’s publications can be found here.

Research focus

Professor Knoppers’s research focuses on human rights as a driver for data sharing. During her July 2016 visit, Professor Knoppers delivered a public lecture, hosted by Hughes Hall and the PHG Foundation, titled "The measured man? Is the time right for a move from genetic testing and biobanking at specific time-points to continuous, real-time monitoring of individuals?"

The seminar, delivered as part of the PHG Foundation's Life Sciences and Society Seminars, explored how this "measured man" approach might affect health systems planning and research, and how it could yield vital new information for personalised healthcare.

Professor Knoppers’s July 2016 visit marked the early stages of a longer term relationship between the LML and Professor Knoppers and her research group at the Centre for Genomics and Policy at McGill University. Professor Knoppers returned to Cambridge for her second of three planned research visits in 2017, from 22-26 May.

Professor Knoppers began her 2017 visit with a Hinxton meeting of P3G, the Public Population Project in Genomics and Society. This was followed by a talk on the 24th May at the Lauterpacht Centre for International Law, entitled 'The Right to Enjoy the Benefits of Science: Sentiment or Law?'. Professor Knoppers was joined by LML Member Dr Rumiana Yotova, and the talk focussed on the right to enjoy the benefits of scientific progress and its applications, which is one of the least studied and discussed human rights despite being set out in both the 1948 Universal Declaration on Human Rights and later in the International Covenant on Economic, Social and Cultural Rights, and whether this right has any implications for access to "big data" in the field of health.

On May 25th, Professor Knoppers was a keynote speaker at 'Gene Editing: From Innovative Science to Effective Policy', a PHG Masterclass on gene editing, alongside Dr Eric Meslin (President and CEO, Council of Canadian Academies), Dr Rumiana Yotova (LML) and Professor Tim Lewens (Cambridge HPS). This masterclass explored how we can balance an accurate understanding of complex biomedical science against the ethical, legal and social issues to develop robust and effective policy.

Professor Knoppers' 2017 visit came to a close with her leading an LML roundtable event: 'Genetic Databases: Who is Liable, When, and For What?' on May 26th. Responding to the US case of Williams v Quest/Athena the event opened with a presentation by Professor Knoppers, before considering issues concerning the sorts of harm which might be caused by genetic databases, who is legally responsible, and in what circumstances?

LML is delighted to be hosting Professor Knoppers in 2018 for her third visit, from 26 to 30 November.