CHSS/PR/56/8
The Mason Institute
The J Kenyon Mason Institute for Medicine, Life Sciences & Law
“Reflecting and continuing the Mason legacy by modelling an openness of spirit and mind, and contributing to academia and public life and society more generally.”
EXECUTIVE SUMMARY
1. This Executive Summary outlines the key elements of the proposal to form the JK Mason Institute for Medicine, Life Sciences Law. It should be read together with the Foundation Document, which provides complete details on the rationale, research strategy, initial projects, governance, staffing plans, and teaching an income-generation programme.
Rationale
2. This proposal builds on the considerable successes of colleagues in the Law School as a result of AHRC funding through the SCRIPT Centre for the study of Intellectual Property and Technology Law. As ten years of funding comes to an end, and as part of planning for Post-SCRIPT, it was agreed that more emphasis could and should be placed on health law within the University. While this has always been a strong component of SCRIPT, it has been overshadowed by the view of SCRIPT as an Intellectual Property and Information Technology Centre. Colleagues both inside and outside of Edinburgh have not necessarily associated SCRIPT with health law, despite considerable funding successes in health law from the Wellcome Trust (part of £3 million collaborative grant), the ESRC (work with Argentinean Ministry of Science, Technology and Innovation), Scottish Government (Generation Scotland) and more. This proposal builds on these successes and existing networks to promote even more strongly the importance of health law both within and further of Edinburgh University. It will allow us to play to strengths across the University in medicine, sciences, social and life sciences that, increasingly, have an interest in and a need for collaborations in law.
Name
3.JK Mason was the Professor of Forensic Medicine in the University of Edinburgh from 1973-1985 and Honorary Fellow in the School of Law from 1985-2011. He has a long-standing international reputation in the fields of forensic medicine and pathology, in medical law and ethics, and reproductive health. His commitment to interdisciplinary work involving medicine, law and life sciences perfectly reflects the ethos of this initiative, as summed up in the strap line:
“Reflecting and continuing the Mason legacy by modelling an openness of spirit and mind in fostering interdisciplinary medico-legal scholarship, and contributing to academia, public life and society more generally.”
4. This mission statement was discussed and agreed at an initial Mason Institute Away Day in the Summer of 2011 attended by colleagues interested in taking this proposal forward. Each College was represented with disciplinary interests including law, sociology, medicine, anthropology, ethics, philosophy of medicine, and sociology of medicine.
Value-Added
5. At present, there is no institutional grouping that is properly placed to bring together the full range of colleagues interested in law’s interaction with medicine and the life sciences.
6. The Mason Institute has strong foundations. There are numerous existing networks and collaborations which have been established and built up through efforts to date, including excellent connections with NHS Scotland, Scottish Government, Nuffield Council on Bioethics, health-law relevant funders and many international organisations (see detailsbelow). Connections have been made across all three Colleges and over 12 departments, including the Global Health Academy. Notwithstanding, these links have been on a project by project basis and without any sense of coordinated research strategy or action. Work has been opportunistic rather than strategic and opportunities have been missed because networks have not been in place and/or because our profile and strengths have not been mobilized as effectively as could happen under a banner such as Mason Institute. Examples include calls from the European Commission for experts in health law to advise on a range of health policies or legislative initiatives, including cross-border care, electronic medical records and data protection.
7. The Mason Institute would feed into and complement existing networks. An example is the Global Health Academy. This does not, at present, have a clear focus on legal issues. Mason Institute could provide this. By the same token, the focus of the Mason Institute is not exclusively on matters of “global health” but also drills down to questions at the level of the individual doctor/patient relationships, national health law issues, domestic and regional public health concerns, and the many questions raised by new and emerging medical technologies, including regulatory and governance issues.
Plans
8.The full documentation details three streams of work for Mason Institute: (1) research and policy; (2) training and support; and (3) teaching and capacity building. It is, therefore, far more than just a network or a grouping. It is envisaged that the Mason Institutewill become a focus for attracting and managing major research grants, impact, teaching and wider public engagement. An outline of initial research plans is contained in the full documentation (see details below). This is grouped under themes of (i) research, technology and systems, (ii) medicine, bioethics and futures, and (iii) wellness, identity and culture.
Support
9. The School of Law is strongly supportive of this initiative as indicated by the endorsement, subject to College mechanisms, of the School of Law’s Management Committee at its meeting in June 2011. This body has also approved a Strategic Initiative Bid to fund two launch events and a research assistant (part-time) for 12 months to assist in seeking and obtaining initial grants. A
10. Additionally, an approach has been made by the Chief Executive Officer of the Institute for Biotechnology Futures, who is keen to establish a “neurolaw” initiative. Informal discussions suggest that the Mason Institute structure is ideal for this and would attract funding to cover core infrastructure costs. Discussions are ongoing and a Memorandum of Understanding for donation is currently being drafted.
Governance and Membership
11. Full details of the governance structure are in the Foundation Document (see details below; particularly Figures 1, 2, 3, and 4 at pp. 12-15). Membership would be drawn from across the University and with external advisory and partner bodies and members. A full list of interested individuals is appended to the Foundation Document. The arrangements have been drafted to reflect the University and College requirements for the establishment of an Institute. The diagram appended to this Executive Summary shows the overall proposed governance structure.
Sustainability and Capacity-Building
12. The Mason Institute proposal includes plans to contribute to and to develop new teaching programmes at Masters and CPD levels, both on-campus and online. The School of Law has already enjoyed considerable success developing distance learning in the University and currently offers an LLM in Medical Law & Ethics. New modules and programmes are detailed in the full documentation (se details below). CPD income to date in the area of Law & Medical Ethics has exceeded £200,000 and attracted over 600 students.
Foundation Document
13. The Foundation Document appended hereto addresses the above in more detail and contains the following sections: Background (Context: para. 14; Justification: para. 15-17); Scope and Aims (Mission: paras. 18-20; Impact: para. 21; Networks: para. 22); Structure and Governance (Classification: paras. 23-24; Membership: paras. 25-28; Organisation: paras. 29-32; Activities: paras. 33-34). This is followed by sections outlining the activities in more detail: Research and Policy (paras. 35-40); Training and Support (paras. 41-44); and Teaching and Capacity (paras. 45-51).
The Mason Institute
The J Kenyon Mason Institute for Medicine, Life Sciences & Law
“Reflecting and continuing the Mason legacy by modelling an openness of spirit and mind, and contributing to academia and public life and society more generally.”
Shawn H.E. Harmon
(for the Mason Institute Founding Committee)
BACKGROUND
CONTEXT
14. Human wellbeing, or flourishing, is an important social, moral, and legal matter. Described as a ‘fundamental freedom’, a phenomenon of ‘special meaning’, and a right ‘fundamental to the attainment of peace and security’, human health – which is more than the absence of disease – is essential for the enjoyment and maximisation of almost all human activities, from child-bearing and child rearing, to knowledge-generation and innovation, to labour and production, to political action and cultural manifestation/advancement, and more. Without some level of good health, social structures would atrophy and fail, and valuable social pursuits would remain unfulfilled. Against this reality, biomedical science and medical technologies are rapidlyevolving, raising new social, legal and ethical dilemmas which have both theoretical and practical implications. Past practices and assumptions are increasingly questioned, and new challenges and issues are regularly identified with respect to medical and life science practice and governance. And while the interconnectedness of human health and other areas of human activity is now much better appreciated, the complex relationships that exist are not well understood. All of thismeans that we are placing much greater and much more diverse demands on medicine and health systems, the life sciences and their technologies, as well as on the law and other humanities. These new demands necessitate specialist joined-up attention.
JUSTIFICATION
15. As indicated above, serious consideration of, and investigation into, the interface between medicine, the life sciences and technological innovation, and law, ethics and social norms is needed, both locally and internationally. We have a responsibility to contemplate and to resolve new and enduring interdisciplinary challenges and questions in a reflexive and timely manner, recognising thatthe individual and the public good are merging and diverging, and the scientific, the commercial and the medical are converging. This requires us to join up our thinking and programmes of inquiry across disciplines, schools, and institutions. It behoves us to do more to close intellectual gaps and to raise the profile of, and build important capacities within, the University of Edinburgh.
16. The Mason Institute, named after the redoubtable Professor John Kenyon Mason, is the vehicle for closing those gaps, conducting innovative world class research, and raising the quality, quantity, and awareness of the research being undertaken, individually and in cooperation with other domestic, European, and international partners at the University of Edinburgh. The Mason Institute will be a fount of evidence-based research and policy advice and a nexus for international collaboration and exchange, drawing on and pulling together a diverse collection of existing networks and forging new ones.
17. Prof. Ken Mason, CBE, MD, LLD, FRCPath, DMJ, FRCPE, FRSE, was Regius Professor of Forensic Medicine from 1973-1985 and Honorary Fellow in the School of Law from 1985-2011, both at the University of Edinburgh. He has a long-standing international reputation in the fields of forensic medicine and pathology, in medical law and ethics, and reproductive health. He has written numerous articles in these fields, and has also published seminal, includingForensic Medicine for Lawyers,The Pathology of Trauma,Mason & McCall Smith’s Law and Medical Ethics, and The Troubled Pregnancy. Prof. Mason’s work and commitment to Edinburgh perfectly embody the ideals to which the Mason Institute aspires.
SCOPE & AIMS
MISSION
18. The Mason Institute strives to reflect the openness of spirit and mind exemplified by J. Kenyon Mason, and to contribute to academia, public life, and the wider society through ground-breaking research and teaching. While rigorous discipline-based inquiry and insight is a foundation of sound knowledge, the Mason Institute, will, whenever appropriate, look beyond the boundaries of doctrine, discipline and institution, joining people together in productive ways and thereby generating more interesting inquiries, greater impact in social and public life, and, ultimately, greater public good.
19. To this end, the Mason Institutewill serve as an integrated, international, interdisciplinary institute founded in the School of Law,but operative across several Schools and beyond, and serving as the vanguard for knowledge-generation and evidence-based investigations into critical and emerging issues regarding thetechnical, social, legal, and ethical dimensions of health, medicine, life sciences and related technologies. Its mission is tofoster both proactive and responsive research of the highest calibre which is genuinely interdisciplinary and which generates profound real-world impacts. In pursuing this objective, the Mason Institute will undertake the following activities:
- Research & Policy:It will provide nationally and internationally-recognised academic leadership in the socio-legal, medical and life science governance, and bioethics fields, doing so through the identification of issues and the pursuit of funded original research, joint and individual publications and conference presentations, the generation of original, ground-breaking texts and practice guides reflecting a range of key socio/legal/medical/bioethical issues, and therein, the shaping of discourse in these focus areas within the UK and beyond. The Mason Institute’s research will serve as strong evidence in its regular input into healthcare and research policy development and improvement. [See Core Activity 1: Research & Policy]
- Training & Support:It will provide ‘best-in-class’ professional development; in-person and online educational programmes and courses for front-line healthcare professionals (HCPs), including physicians, residents, nurses, researchers, and allied practitioners (e.g.: incoming members of research boards, health services organisations, and hospital/agency board members).[1] This will be leading-edge capacity-building education delivered directly into health systems.[2] Related to this, it will provide practical support/advice to medical and bioethics practitioners and policy-makers (medical schools, hospitals, RECs, etc), as well as coordination between universities, health authorities/services, and other external organisations. [See Core Activity 2: Training & Support]
- Teaching & Capacity: Mason Institute Members will develop new undergraduate and post-graduate courses and classes in medical jurisprudence and ethics, medical research law and ethics, public health law and ethics, and related topics like intellectual property, focusing on emerging medico-legal and ethical issues, and the needs of vulnerable populations. This should attract increased numbers of undergraduate and graduate students and post-doctoral fellows. The Mason Institute will also work to increase legal, socio-legal, and interdisciplinary capacity in the medicine and life sciences fields in developing countries. [See Core Activity 3: Teaching & Capacity]
20. In doing the above, the Mason Institute will observe, analyse, evaluate, and consider desirable changes and new pathways of action in the practice and governance of health, medicine, and the life sciences and related technologies.
IMPACT
21. The Mason Institute will pursue an ambitious impact agenda which will be realised across disciplines and jurisdictions. As alluded to above, it will produce high-quality publications, both scholarly andpolicy, which will stand out as a result of our collaborative efforts. Through its innovative programme of theoretical and practical/applied research, it will forge an innovative and exciting teaching programme comprising a range of disciplinary and interdisciplinary courses appropriate to law, sociology, science and technology studies, public health, and medicine. It will disseminate its findings to academic and stakeholder communities,engaging proactively with a range of stakeholder communities in the UK, Europe, and internationally.
NETWORKS
22.An important component of the Mason Institute’s unique research capacity and potential for impact is the breadth of its contacts and networks. The current Members already have and will strengthen close collaborative relationships with colleagues at the Schools of Biomedical Sciences, Clinical Sciences & Community Health, College of Art, Divinity, GeoSciences, Health in Social Science, Law, Literature, Languages & Cultures, Molecular & Clinical Medicine, Philosophy, Psychology & Language Sciences, and Social & Political Science. Additionally, direct links to the following relevant organisations already exist and will be brought together in creative and productive ways:
- Argentina: Advisory Committee on Regenerative Medicine & Cellular Therapies; Centro de Estudios en Bioderecho;INCUCAI; Ministry of Science, Technology and Productive Innovation; University of Buenos Aires;
- Canada: Alberta Research Ethics Boards (6); Calgary Chamber of Commerce; Canadian Bioethics Association; Dalhousie University Law School; Dalhousie University Medical School; Dossiter Centre; Health Law Institute (Edmonton); Huestis Ritch (firm); McGill University; Provincial Health Ethics Network;University of Calgary Medical School; University of New Brunswick Law School; Saint Mary’s University;
- India:Biomedical & Health Experimentation in South Asia;
- Scotland: Edinburgh Brain Bank; Generation Scotland; Information Statistics Division, National Records of Scotland;Lothian Biobank; NHS Scotland; Roslin Cells; Scottish Health Informatics Platform; Scottish Parliament; University of Glasgow;
- Taiwan: Academia Sinica; Asia University; Feng Chia University; National Cheng Kung University;National Science Commission;
- UK: Academy of Medical Sciences; Baker & McKenzie (firm); British Medical Association; ESRC Genomics Network; Network of Scientists & Engineers; Nottingham University; Nuffield Council on Bioethics; Oxford University; PHG Foundation; Queen’s University Belfast; University of Exeter; University of Liverpool; University of Manchester; UK Biobank; Wellcome Trust;
- Europe: European Association of Health Law; Free University of Brussels (Belgium); Hanover University (Germany); University of Prague (Czech Republic); University of Stockholm (Sweden); University of Tilburg (Netherlands);
- International: Harvard Science & Democracy Network; International Risk Governance Council; Public Population Project in Genomics; World Intellectual Property Organisation.
STRUCTURE & GOVERNANCE