Graeme Laurie is Professor of Medical Jurisprudence at the University of Edinburgh and Founding Director of the JK Mason Institute for Medicine, Life Sciences and the Law. He is the holder of a Wellcome Trust Senior Investigator Award and Principal Investigator for a project entitled Confronting the Liminal Spaces of Health Research Regulation. This is a £1 million, five-year, interdisciplinary project, due to begin in October 2014. You can follow more details of the project here: @LiminalSpacesWT.
Graeme Laurie previously held the role of PI and Director of the Arts and Humanities Research Council (AHRC) Research Centre for Studies in Intellectual Property and Technology Law - also known as SCRIPT - from 2007-2011, until he took up the position of Director of Research in the School of Law (2011-2014).
His research interests include the role of law in promoting and regulating science, medicine and technology. He has been involved in numerous successful collaborative bids with groups of law and non-law colleagues, including clinicians, geneticists and medical social scientists, to the total value of c.£15 million. These include: AHRC/SCRIPT Phase 1 c.£1 million (2002-2007); ESRC Innogen Phase 1 c.£1.9 million (2002-2007); Generation Scotland [SHEFC] c.£1.8 million (2003-2008); AHRC/SCRIPT Phase 2 c.£1.5 million (2007-2012); ESRC Innogen Phase 2 c.£2.5 million (2007-2014); Wellcome Trust Scottish Health Informatics Programme - SHIP consortium c.£3.6 million (2009-2014); and MRC/WT et al. Farr Institute, c.£4 million (2013-2016). The total sums directly attributable to Edinburgh Law School are in excess of £4 million. The focus of these collaborative efforts has always been legal and ethical dimensions of medical and scientific developments, with particular emphasis on the responsible promotion of medical science.
In addition to the Wellcome Trust Liminal Spaces Project, Graeme Laurie is currently involved in three other externally-funded initiatives:
- EU Commission's Innovative Medicines Initiative on stem cell banking: EBiSC (2014-2017)
- ESRC Administrative Data Research Centres: ADRC Scotland (2013-2016)
- 10-funder consortium on data linkage for health research: Farr Institute (2013-2016)In policy terms, Graeme Laurie was the Chair of the permanent UK Biobank Ethics and Governance Council from 2006-2010 and Chair of the Privacy Advisory Committee in Scotland from 2005-2013. He served as the Founding President of the European Association of Health Law from 2008-2013. He is currently a member of number of external professional and policy bodies including the Nuffield Council on Bioethics and the British Medical Association's Medical Ethics Committee. He served as a member of the Royal Society Working Group on Science as an Open Enterprise (2011-12), the Council of Europe Expert Group on the revision of Recommendation 2006(4) on research on biological materials of human origin (2012-2014), and most recently he has joined the Canadian Academies' Expert Panel on Timely Access to Health and Social Data for Health Research and Health System Innovation (2014-).
Finally, Edinburgh will host of the 13th World Congress of the International Association of Bioethics in June 2016. Graeme Laurie is the Chair of the UK Organising Committee, working with professional conference organiser, Conference Partners, and the host venue the Edinburgh International Conference Centre. The theme of the Congress will be Individuals, Public Interests and Public Goods: What is the Contribution of Bioethics? The IAB2016 event will have a particular focus on early career researchers and art+ethics. More details available at the IAB2016 website here, and on Twitter @IAB2016.
Fundamental Issues in Medical Jurisprudence (Honours)
Kuan-Hsun Chen 'Biomedical Research and Benefit-Sharing'
Tarmphong Chobisara 'Partnership and Biobank Governance'
Edward Dove 'Promoting Health Research and Protecting Participants? The Impact of 'Next-Generation' Health Research Regulation on Research Ethics Committees'
Laura Downey 'Technological Challenges to Legal Norms in Health Care'
Aisling McMahon 'The place for a 'European' morality in the patenting of biotechnology.'
Catriona McMillan 'How adequate are the present regulations and regulatory structure as a means of dealing with legal and ethical issues that arise from the use of embryos for research and artificial reproduction?'
Maureen O'Sullivan 'Deconstructing Patents at the Edge of Reason'
Zoe Picton-Howell 'What Does the Law Bring to Difficult Medical Decision Making on Behalf of Children with Complex Health Problems and Disability?'
Emily Postan 'Defining Ourselves: self-construction and the governance of personal biological information'
Nayha Sethi 'Principles and Rules : friends, foes or family?'
Susan Thomson 'What does Professionalism mean in Forensic Pathology?'
Graeme Laurie, J. Kenyon Mason Law and Medical Ethics 9th ed (OUP, 2013)
Abstract: This classic textbook has provided students of medical law and ethics with a framework for exploring this fascinating subject for over 25 years. The ninth edition is essential reading for any serious medical law student or practitioner, as well as being of interest to all those involved in the delivery and control of modern health care.
Graeme Laurie, Smita Kheria, Jane Cornwell, Charlotte Waelde, Abbe Brown Contemporary Intellectual Property: Law and Policy 3rd edn (Oxford University Press, 2013)
Graeme Laurie, J. Kenyon Mason Law and Medical Ethics, 8th ed. (Oxford University Press, 2010)
Hector MacQueen, Graeme Laurie, Abbe Brown, Charlotte Waelde Contemporary Intellectual Property Law and Policy 2nd edn (OUP, 2010)
Hector MacQueen, Graeme Laurie, Charlotte Waelde, Abbe Brown Contemporary Intellectual Property: Law and Policy (OUP, 2007)
Abstract: The book offers an original perspective on intellectual property law. Beyond providing a thorough and up-to-date account of intellectual property law, the text examines the complex policies that inform and guide modern IP law at the domestic (including Scottish), European and international levels. The focus is on contemporary challenges to intellectual property law and policy.
Graeme Laurie, J. Kenyon Mason Mason and McCall-Smith's Law and Medical Ethics (Oxford University Press, 2006)
Abstract: This is the seventh edition of this medical law textbook, and continues to provide an overview of the inter-relationship between medical ethics and practice and the law. There is, therefore, an emphasis on those aspects of medical practice that are governed, to a large extent, by the moral law. However, medical law, as such, is still a developing discipline which is being mainly shaped by the courts and there is extensive coverage of seminal and recent judicial decisions, particular attention being given to those which define the limits of professional freedom in the light of the increasing importance attached to personal autonomy. The book incorporates a strong element of comparative medical law having a particular interest in the shift of influence from other Anglophone jurisdictions to those in Europe. The text is directed in the main to students and practitioners of law but the overarching importance attached to ethical principles broadens its appeal to all those involved in the control and delivery of modern healthcare.
Graeme Laurie Genetic Privacy: A Challenge to Medico-Legal Norms (Cambridge University Press, 2002)
Graeme Laurie, Pamela Ferguson Inspiring a Medico-Legal Revolution: Essays in Honour of Sheila McLean (Ashgate Publishing Limited, 2015)
Abstract: This book marks the retirement of Professor Sheila McLean, who contribution to the discipline of medical law has been truly ground breaking. As one of the pioneers of the discipline, Sheila McLean inspired a revolution in the ways in which doctors, lawyers, courts and patients perceive the relationship between medicine and law. The collection brings together 21 leading scholars in healthcare law and ethics to honour the breadth and significance of her contribution. The chapters cover areas as diverse as start and end of life, reproductive rights and termination of pregnancy, autonomy of patients, the protection of vulnerable patient grounds, and the challenges posed by new technologies.
Graeme Laurie, Alexander McCall Smith, J. Kenyon Mason Law and Medical Ethics (Butterworths, 2002)
Abstract: Sixth Edition of leading medical law textbook
Graeme Laurie, Susan E Wallace, Elli G Gourna, Osama Shoush and Jessica Wright 'Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-consent in Longitudinal Biomedical Research' (2015) Bioethics
Abstract: Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on 'responsive autonomy,' that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed.
Graeme Laurie, Pamela Carter 'The Social Licence for Research: Why care.data Ran Into Trouble' (2015) Journal of Medical Ethics 1-6 [Download]
Abstract: This article draws on the concept of the social licence to explain public concern at the introduction of care.care, a recent English initiative designed to extract patient data from medical records for commissioning and other purposes, including research. The analysis not only explains what went wrong but also re-enforces a key message that mere legal authority does not necessarily command social legitimacy.
Graeme Laurie 'Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications' (2014) Journal of Law, Medicine and Ethics 42(1) 53-63
Abstract: This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that can be protected by the right not to know are better conceived of as privacy interests rather than autonomy interests. This not only helps us to understand what is in play but also informs regulatory, professional, and legal responses to handling information and taking decisions about whether or not to disclose information to persons about themselves. The practical implications of this conceptualization are explored in the context of feedback policies in health-related research.
Nayha Sethi, Graeme Laurie 'Delivering proportionate governance in the era of eHealth: Making linkage and privacy work together' (2013) Medical Law International 13
Abstract: This article advances a principled proportionate governance model (PPGM) that overcomes key impediments to using health records for research. Despite increasing initiatives for maximising benefits of data linkage, significant challenges remain, including a culture of caution around data sharing and linkage, failure to make use of flexibilities within the law and failure to incorporate intelligent iterative design. The article identifies key issues for consideration and posits a flexible and accessible governance model that provides a robust and efficient means of paying due regard to both privacy and the public interests in research. We argue that proportionate governance based on clear guiding principles accurately gauges risks associated with data uses and assigns safeguards accordingly. This requires a clear articulation of roles and responsibilities at all levels of decision-making and effective training for researchers and data custodians. Accordingly, the PPGM encourages and supports defensible judgements about data linkage in the public interest.
Nayha Sethi, Graeme Laurie 'Towards Principles-Based Approaches to Governance of Health-Related Research Using Personal Data' (2013) European Journal of Risk Regulation 1 43-57
Abstract: Technological advances in the quality, availability and linkage potential of health data for research make the need to develop robust and effective information governance mechanisms more pressing than ever before; they also lead us to question the utility of governance devices used hitherto such as consent and anonymisation. This article assesses and advocates a principles-based approach, contrasting this with traditional rule-based approaches, and proposes a model of principled proportionate governance. It is suggested that the approach not only serves as the basis for good governance in contemporary data linkage but also that it provides a platform to assess legal reforms such as the draft Data Protection Regulation.
Graeme Laurie, Emily Postan 'Rhetoric or Reality: What is the Legal Status of the Consent Form in Health-related Research?' (2012) Medical Law Review 44pp doi 101093medlawfws031
Abstract: This article addresses the unresolved conundrum of the legal status of consent forms used in research involving tissue samples or personal data. It identifies which rights participants might have by virtue of any consent form they have signed and which legal remedies might be available to them should the research depart from the terms of the original consent. The paper demonstrates that, although the legal status of consent forms is not clear in the UK, the landscape is evolving. We suggest that the growing legal protection afforded to autonomy and judicial recognition of individual property rights in tissues may offer opportunities for remedies in law where the regulatory regimes controlling uses of human tissue and personal data do not. However, we argue that in the governance of research relationships-which depend crucially on trust-resort to legal remedy may be undesirable. We suggest that treating consent as a one-off event that can be effectively captured in a written document-as the law tends to do-is an inappropriate and counter-productive approach. The aims of ethical research governance will be better served by seeing consent as continuing relational process, requiring on-going mutual respect, opportunity for communication, and accommodation of changing circumstances. The consent form is merely a framing instrument and only the starting point for a partnership that will evolve over time. Crucially, the limits of consent must be recognised in the design and governance of modern research practices. The article concludes with recommendations to reconceive consent in these terms.
Graeme Laurie, Shawn H.E. Harmon, Fabiana Arzuaga 'Foresighting Futures: Law, New Technologies and the Challenges of Regulating for Uncertainty' (2012) Law, Innovation and Technology 4 1-33
Abstract: This paper is concerned with making law more effective in its social operation and in its relationship with dynamic, complex and uncertain science. It explores how we might better regulate by considering the concept and role of 'legal foresighting'. It argues that legal foresighting is eminently justifiable and needs to be expanded, enhanced, and vastly improved. It offers a framework for performing legal foresighting in the face of new and emerging technologies, drawing in particular on the authors' experience in the bioscience and biotechnologies context.
Graeme Laurie 'Reflexive Governance in Biobanking: On the Value of Policy Led Approaches and the Need to Recognise the Limits of Law' (2011) Human Genetics 130 347-56
Graeme Laurie 'Managing Access to Biobanks: How Can We Reconcile Privacy and Public Interests?' (2010) Medical Law International 10 315-38
Shawn H.E. Harmon, Graeme Laurie 'Yearworth v. North Bristol NHS Trust: Property, Principles, Precedents and Paradigms' (2010) Cambridge Law Journal 69 476-93
Graeme Laurie, Kathryn G Hunter 'Mapping, Assessing and Improving Legal Preparedness for Pandemic Flu in the United Kingdom' (2009) Medical Law International 10 101-38
Graeme Laurie 'The Stem Cell research Environment: A Patchwork of Patchworks' (2009) Stem Cell Reviews and Reports 5 82-92
Graeme Laurie 'Guest Editorial: The European Association of Health Law: Addressing Unmet Needs in Policy, Practice and Research' (2008) European Journal of Health Law 3 251-59
Graeme Laurie 'Guest Editorial: Fore-warned is Fore-armed: Is Intellectual Property a Suitable Case for Foresight?' (2008) International Review of Intellectual Property and Competition Law 39 507-10
Graeme Laurie 'Guest Editorial: Evidence of support for biobanking practices' (2008) British Medical Journal 337 186-87
J. Kenyon Mason, Graeme Laurie 'Personal Autonomy and the Right to Treatment: A Note on R on the Application of Burke v General Medical Council' (2005) Edinburgh Law Review 9 123-32
Graeme Laurie 'Patenting Stem Cells of Human Origin' (2004) European Intellectual Property Review 59-66
Graeme Laurie 'DNA Theft: A New Crime in the UK' (2003) Nature Reviews Genetics 4 584
J. Kenyon Mason, Graeme Laurie 'Misfeasance in Public Office: An Emerging Medical Law Tort?' (2003) Medical Law Review 11 194
Graeme Laurie 'Pharmacogenomics and Human Rights' (2002) Biotechnology Investment Today 60-65 Spring
Graeme Laurie 'Challenging Medical Legal Norms: The Role of Autonomy, Confidentiality and Privacy in Protecting Individual and Familial Group Rights in Genetic Information' (2001) Journal of Legal Medicine 22 1-54
J. Kenyon Mason, Graeme Laurie 'Consent or Property: Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey' (2001) Modern Law Review 64 710-79
Graeme Laurie, Michael Grodin 'Susceptibility Genes and Neurological Disorders - Learning the Right Lessons from the Human Genome Project' (2000) Archives of Neurology 57 1569-74
Graeme Laurie 'Genetics and Patients' Rights: Where are the Limits?' (2000) Medical Law International 5 25-44
Graeme Laurie 'Protecting and Promoting Privacy in an Uncertain World: Further Defences of Ignorance and the Right Not to Know' (2000) European Journal of Health Law 7 185-91
Graeme Laurie, J. Kenyon Mason 'Negative Treatment of Vulnerable Patients: Euthanasia by any other Name?' (2000) Juridical Review 159-78
Graeme Laurie 'Wielding the Implement of Law: Distilling New Rights and Responsibilities in the Age of the 'New Genetics'' (1999) Health, Risk and Society 1 333-41
Graeme Laurie 'Parens Patriae Jurisdiction in the Medico-legal Context: The Vagaries of Judicial Activism' (1999) Edinburgh Law Review 3 95-107
Graeme Laurie 'Obligations Arising from Genetic Information: Negligence and the Protection of Familial Interests' (1999) Child and Family Law Quarterly 11 109-24
Graeme Laurie 'In Defence of Ignorance: Genetic Information and the Right Not to Know' (1999) European Journal of Health Law 6 119-32
Graeme Laurie 'Intellectual Property Rights and the Interests of Indigenous Peoples' (1997) Lesotho Law Journal 10 107-26
Graeme Laurie 'The Most Personal Information of All: An Appraisal of Genetic Privacy in the Shadow of the Human Genome Project' (1996) International Journal of Law, Policy and the Family 10 74-101
J. Kenyon Mason, Graeme Laurie 'The Management of Persistent Vegetative State in the British Isles' (1996) Juridical Review 263-83
Graeme Laurie, J. Kenyon Mason 'Trust or Contract: How Far Does the Contemporary Doctor-patient Relationship Protect and Promote Autonomy?' in Graeme Laurie, Pamela Ferguson (eds) Inspiring a Medico-Legal Revolution: Essays in Honour of Sheila McLean (Ashgate Publishing Limited, 2015) 73-94
Abstract: The law has intervened extensively in the last 30 years in the name of autonomy enhancement and the protection of those with reduced mental capacity. It is, however, far from clear how much this has resulted in a net increase in the substantial trust that patients feel towards healthcare professionals - indeed, the opposite might be true. This chapter considers these developments against the backdrop of Sheila McLean's contributions on the topics of consent and autonomy. It argues that a failure by law and its institutions to grasp the nuances and contours of authentic autonomy has encouraged a pseudo-contractual doctor-patient dynamic in which patient abandonment is legally sanctioned and the spectre of paternalism remains. While recognising that law cannot prescribe trust, it nonetheless suggests ways in which law's future direction of travel could be more conducive to the promotion of a genuine therapeutic partnership.
Graeme Laurie 'Privacy and the Right Not to Know: A Plea for Conceptual Clarity' in Darren Shickle (eds) The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility (Cambridge University Press, 2014) 38-51
Graeme Laurie, Shawn H.E. Harmon 'Through the Thicket and Across the Divide: Successfully Navigating the Regulatory Landscape in Life Sciences Research' in Emilie Cloatre (eds) Knowledge, Technology and Law (Routledge, 2014) 121-136
Graeme Laurie 'Consent' in (eds) Law and Medical Ethics (Oxford University Press, 2013)
Graeme Laurie 'Body as Property' in (eds) Law and Medical Ethics (Oxford University Press, 2013) Chpt.20, pp.485-497
Graeme Laurie 'Genetic Information and the Law' in (eds) Law and Medical Ethics (Oxford University Press, 2013) Chpt.7, pp.167-188
Graeme Laurie 'Prenatal Screening and Wrongful Life' in (eds) Law and Medical Ethics (Oxford University Press, 2013)
Graeme Laurie 'The UK Biobank Ethics and Governance Council: How valuable is an "Ethics+" A Approach to Governance?' in Kris Dierickx, Pascal Borry (eds) New Challenges for Biobanks: Ethics, Law and Governance (Intersentia, 2010) pp. 239-48
Graeme Laurie 'Patenting and the Human Body' in Andrew Grubb, Judith Laing and Jean McHale (eds) Principles of Medical Law, Third Edition (Oxford University Press, 2010) pp. 1051-86
Graeme Laurie, Katherine G Hunter 'Involving Publics in Biobank Governance: Moving Beyond Existing Approaches' in Heather Widdows and Caroline Mullen (eds) The Governance of Genetic Information (Cambridge University Press, 2009) pp.151-77
Graeme Laurie, A Hunt, M Richards 'UK Biobank Ethics and Goverance Council: An Exercise in Added Value' in Jane Kaye and Mark Stranger (eds) Principles and Practice in Biobank Governance (Ashgate, 2009) pp. 229-42
Graeme Laurie, Ann Bruce, Catherine Lyall 'The roles of values and interests in the governance of the life sciences: learning lessons from the "Ethics+" approach of UK Biobank' in Cathrine Lyall, James Smith and Theo Papaioannou (eds) The Limits to Governance: The Challenge of Policy-Making for the New Life Sciences (Aldershot: Ashgate, 2009)
Graeme Laurie 'Genetic Testing and the Criminal Law in the United Kingdom' in Chalmers, Don (eds) Genetic Testing and the Criminal Law (UCL Press, 2005) pp.187-239
Graeme Laurie 'Patenting and the Human Body' in Ian Kennedy, Andrew Grubb (eds) Principles of Medical Law, Second Edition (Oxford University Press, 2004) pp.1079-1101
Graeme Laurie 'Privacy and Property - Multi-level Strategies for Protecting Interests in Genetic Material' in BM Knoppers and C Shriver (eds) Genomics, Health and Society - Emerging Issues for Public Policy (Policy Research Initiative, Canada, 2003) pp.83-98
Graeme Laurie 'Medical Genetics' in Frieder Dunkel and Kirsten Drenkhahn (eds) Youth Violence: New Patterns and Local Responses - Experiences in East and West (Forum Verlag Godesberg GmbH, Munchengladbach, 2003) chapter 15 (pp.189-195)
Abstract: with N. Muir and D. Bell
Graeme Laurie 'Medical law and human rights: passing the parcel back to the profession?' in Alan Boyle, Chris Himsworth, Hector MacQueen, Andrea Loux (eds) Human Rights and Scots Law (Hart Publishing, 2002) 245-274, 343-344
Graeme Laurie 'Privacy Property or Permission - Need our Models for Regulating Personal Genetic Material Be Mutually Exclusive' in (eds) Law and Technology (ACTA Press, 2002) 16-22
Graeme Laurie 'Legal and Ethical Implications of Life Extension Techniques' in (eds) New Research into the Treatment of Cancer and Age-Related Disease (Institute of Nanotechnology/DTI Biotechnology Division/Cancer Research Campaign, 2002) pp. 60-64
Graeme Laurie 'Law, Ethics and Genetics' in Reeve, Eric (ed.) (eds) Encyclopedia of Genetics (Fitzroy Dearborn, 2001) pp.594-605
Graeme Laurie 'Permanent Vegetative State: An Exercise in Legal Uncertainty' in LSS and BMA (eds) Competency and Consent in Vulnerable Persons (Law Society of Scotland and British Medical Association, 2000) pp.77-88
Graeme Laurie 'Civil Litigation following Injury and Death from Trauma - The Health Care Professional in Jeopardy' in J. Kenyon Mason, Basil N. Purdue (eds) The Pathology of Trauma (Arnold, 1999) pp.408-503
Graeme Laurie 'Biotechnology - Facing the Problems of Patent Law' in Hector MacQueen Innovation, incentive and reward. intellectual property law and policy (Edinburgh University Press, 1997) Vol. 5(3) pp.45-63
Graeme Laurie 'Biotechnology and Intellectual Property: A Marriage of Inconvenience?' in Sheila A. M. McLean (eds) Contemporary Issues in Law, Medicine and Ethics (Aldershot, Dartmouth, 1996) Chpt.12, pp.237-267
Notes and Reviews
J. Kenyon Mason, Graeme Laurie 'Assistance in Dying or Euthanasia? Comments on the End of Life Assistance (Scotland) Bill' (2010) Edinburgh Law Review 14 493-97
Graeme Laurie 'Better to Hesitate at the Threshold of Compulsion: PKU Testing and the Concept of Family Autonomy in Eire' (2002) Journal of Medical Ethics 28 136-38
Graeme Laurie 'Medical Records Linkage: When is it Lawful and in the Public Interest' (2002) E-L@w Review Issue 4 5-6
Graeme Laurie 'Owning the Genome' (2001) Science and Public Affairs (June)10-11
Graeme Laurie 'Intellectual Property and the Human Genome' (2001) Chartered Institute of Patent Agents Journal (July) 352-54
Graeme Laurie, Michael Grodin 'Review - Against Relativism - Cultural Diversity and the Search for Ethical Universals in Medicine' (2000) Perspectives in Biology and Medicine 43 627-29
Graeme Laurie 'Genetic Discrimination: How Does UK Law Measure Up?' (2000) Genetics Law Monitor 6-7
Graeme Laurie 'Review - Law and Human Genetics' (2000) Journal of the Law Society of Scotland 45(4) 41
Graeme Laurie 'Review - Protecting Privacy' (2000) Law Quarterly Review 116 173-79
Graeme Laurie 'Review - Medical and Dental Negligence' (1998) Edinburgh Law Review Vol2(2) pp243-245
Graeme Laurie 'Review - Trade Related Aspects of Intellectual Property Rights: A Concise Guide to the TRIPS Agreement' (1998) International Journal of Law and Information Technology 6 245-46
Graeme Laurie 'Review - AIDS: A Guide to the Law' (1996) Medical Law International 2 183-87
Graeme Laurie, Leslie StevensDr Kerina H Jones, Dr Christine Dobbs, 'A Review of Evidence Relating to Harm Resulting from Uses of Health and Biomedical Data' (2015) [Download]
Abstract: The Nuffield Council on Bioethics (NCOB) Working Party on Biological and Health Data and the Wellcome Trust's Expert Advisory Group on Data Access (EAGDA) commissioned this evidence review to better understand the nature of the actual harms resulting from data misuse and security breaches involving sensitive personal biomedical and health data; the relevant, regulatory definitions; the appropriate context in which to assess harm; the effectiveness of sanctions and remedies; and the opportunity costs to institutions or individuals of not sharing or linking data. A multidisciplinary approach was taken resulting in a three-pronged approach to the evidence review: hard (legal), soft (psychosocial) and twitter (for an international perspective on data misuse).
Graeme Laurie, Leslie Stevens 'The Administrative Data Research Centre Scotland: A Scoping Report on the Legal & Ethical Issues Arising from Access & Linkage of Administrative Data', Edinburgh Law School Working Paper Series, 2014/35 (SSRN, 2014) [Download]
Abstract: This initial scoping report outlines the original research to be undertaken for the legal work package of the Economic and Social Research Council (ESRC) funded Administrative Data Research Centre-Scotland (ADRC-S), by Professor Graeme Laurie and Ms Leslie Stevens based at the University of Edinburgh, School of Law and J Kenyon Mason Institute for Medicine, Life Sciences and the Law. The report provides an overview of the regulatory context in which administrative data linkages currently operate in Scotland, highlighting the crucial legal and ethical issues which arise from the current mixed legal landscape under which administrative data linkages operate. Adopting an approach that takes into account both the risks and the benefits that can be achieved through administrative data linkage research in the public interest, Laurie and Stevens argue for a principles-based approach to the governance of administrative data used for research purposes. By looking to established best practice in the field of data linkages in the health sector, and most notably the Good Governance Framework developed for the Scottish Health Informatics Programme (SHIP), the paper argues for a approach that will determine which principles can operate in a framework of robust and proportionate governance of administrative data linkages in Scotland. This is the first in a series of papers for the legal work package of the ESRC-funded ADRC-S. Subsequent papers will focus on particular research questions of the legal work package, notably the adaption of a principles based approach to the governance of administrative data; use of historical administrative data and the risks and benefits of commercial involvement in research.
Graeme Laurie, Nayha SethiClaudia Pagliari, Mhairi Aitken, Sarah Cunningham-Burley, Sara Davidson,, Christopher McLean and Steven Treanor, 'Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes', Scottish Government Social Research Series (APS Group Scotland, 2013) [Download]
Abstract: Report of a deliberative research project on the public's attitudes towards data sharing. It focuses particularly on a) the public's opinion about data sharing with the private and third sector; b) the acceptability of different methods for sharing benefits gained from the use of their data; and c) the appeal of different methods for empowering citizens in decision making about the use of their data.
Graeme Laurie, Nayha Sethi 'Information Governance of Use of Health-Related Data in Medical Research in Scotland: Towards a Good Governance Framework', Edinburgh Law School Working Paper Series, 2012/13 (SSRN, 2012) [Download]
Abstract: This paper is the second in a series addressing information governance challenges in health-related research involving patient data and it is set against the current legislative and common law landscape within the UK. In Working Paper No.1 we described the diverse actors, regulatory bodies and systems in place within the current framework, and critically examined their roles relative to the different ethical and legal issues at stake and the surrounding literature. In light of this analysis, we advanced a template for good governance: a series of questions relating to benchmarks and standards against which existing and emerging governance models can be assessed. We then evaluated the current governance landscape against these standards, highlighting key areas that required improvement, concluding with recommendations for change. This paper moves one step further and examines more closely what it means to talk of good governance in the health-related research arena. We draw upon our research as part of the SHIP initiative - a consortium working to build the Scottish Health Informatics Platform, funded by the Wellcome Trust and in partnership with NHS Scotland. We build on our academic findings and practical experience of working iteratively with key policy and practice stakeholders in the field to propose a new model of good governance in practice. In particular, we consider how guiding principles and best practice, in tandem with a good governance template, provide not only a good governance framework for SHIP but also an approach that is transformative of the ways in which health-related research is carried out and governed, both in Scotland and elsewhere. The elements of good governance that we advance are set in the context of health data for research. It is important to note, however, that the lessons that can be learned from our work - and the model that we proffer - are applicable to a much broader range of governance settings, such as local authority and other public/private instances of data sharing. Our model adopts an approach of proportionate governance and is unique in this regard. It goes far beyond existing approaches to information governance in the research context while fully respecting relevant ethical and legal norms.
Nayha Sethi, Graeme Laurie 'Information Governance of Use of Health-Related Data in Medical Research in Scotland: Current Practices and Future Scenarios', Edinburgh Law School Working Paper Series, 2011/26 (SSRN, 2011) [Download]
Abstract: This paper has been prepared as part of the governance work stream of the Scottish Health Informatics Programme (SHIP). It is intended as a platform for discussion and further elaboration with colleagues and those interested in issues surrounding the governance of secondary uses of health data for research. The main aims of the paper are two-fold. First, to offer an ethical, legal and social account of the current regulatory framework governing the use of person identifiable information (PII) for medical research in Scotland. It does so by both mapping out the legislation and key actors involved in governance, as well as illustrating how the framework is perceived to work in practice. A second aim of the report is to suggest a template to be used in the assessment of good governance. This template can be used both to evaluate current practices and to test any proposals for change in approaches to governance in Scotland and elsewhere with respect to uses of patient data for research purposes. It is anticipated that this template will be developed and refined with input from SHIP colleagues (particularly those at Information and Statistics Division (ISD) of NHS Scotland and those involved in the SHIP Systematic Review) as well as other stakeholders. This is the first in a series of papers in the governance stream of the SHIP programme, funded by the Wellcome Trust. Future papers will address the design challenges of a new system of information governance for health-related medical research in Scotland.
Papers and Presentations
Nayha Sethi, Graeme Laurie 'Scottish Health Informatics Programme - What can we learn from the Scottish Approach to governance' presented at International Data Linkage Conference, Perth, Australia, 2012
Graeme Laurie 'Should There Be An Obligation of Disclosure of Origin of Genetic Resources in Patent Applications?' presented at First International Congress on Commercial Law and Business, Buenos Aires, Argentina, 2005
Graeme Laurie 'Tackling Community Concerns about Commercialisation and Genetic Research: A Modest Interdisciplinary Proposal' presented at Scientific Advancements in Medicine: Legal and Ethical Issues, University of Birmingham, UK, 2005
Graeme Laurie 'Paternalism and the Patient: Where Does Choice Leave Responsibility?' presented at Current Legal Problems, University College, London, 2005
Graeme Laurie, Hunter, Kathryn 'Benefit Sharing and Public Trust in Genetic Research' presented at International ELSAGEN Conference on Ethical, Legal and Social Aspects of Human Genetic Databases, Reykjavik, Iceland, 2004
Abstract: with KG Hunter
Graeme Laurie 'La Vie Privée, La Propriété, La Personnalité : Doivent-elles être liées?' presented at Centre de Recherche en Droit Public: Conferences, University of Montreal, Montreal, Canada, 2004
Graeme Laurie 'Our Genes: Our Choice - But what is the Role of 'Choice' in Protecting Genetic Privacy?' presented at Our Genes: Our Choice, University of McGill, Montreal, Canada, 2004
Graeme Laurie 'Broadening the range of IPR beneficiaries: The role of consent in the patenting process.' presented at Bioethical Issues of Intellectual Property in Biotechnology, Tokyo, Japan, 2004
Graeme Laurie 'Patenting Stem Cells of Human Origin' presented at ATRIP International Association of Teachers and Researchers in Intellectual Property, Tokyo, Japan, 2003
Graeme Laurie 'What is wrong with European Patent Law and Policy on Stem Cells' presented at Stem Cells - Shaping the Future, London, 2003
Graeme Laurie 'Legal and Ethical Aspects of Genetic Privacy' presented at Protecting Patients Personal Data and Genetic Information, Nicosia, Cyprus, 2003
Graeme Laurie 'Patents, Patients and Consent - A Legal Perspective' presented at Bioethical Issues of Intellectual Property Rights, Cambridge, 2003
Graeme Laurie 'Privacy, Property or Permission - Need Our Models for Regulating Personal Genetic Material Be Mutually Exclusive' presented at Law and Technology, Cambridge, Massachusetts, USA, 2002
Graeme Laurie 'Genetic Privacy or Solidarity - Can the Law Regulate Competing Claims to Genetic Information' presented at Genetics and Law Conference, London, 2002
Graeme Laurie 'Privacy, Property and Personality - A Case for Conceptual Linkage' presented at Expert Meeting on Privacy, Property and Personality, 2002
Graeme Laurie 'Genetic Information, Confidentiality and Informed Consent - Legal Issues' presented at Genetics and Health Policy Course, 2002
Graeme Laurie 'Human Rights and Pharmacogenomics' presented at British Pharmaceutical Conference, 2001
Abstract: Glasgow, September 2001
Graeme Laurie 'Genetic Databases' presented at World Health Organisation (European Partnership on Patients Rights and Citizens Empowerment), 2001
Abstract: Budapest, September 2001
Graeme Laurie 'Intellectual Property - Let's Think About Staking a Claim to our own Genetic Material' presented at Human Genome Organisation Satellite Conference, 2001
Abstract: Edinburgh, April 2001
Graeme Laurie 'Gift and the Paradox of the Property Paradigm' presented at Cultural Dimensions of the New Genetics, Lancaster, 2001
Graeme Laurie 'Genetics and Insurance - Is it in the Public Interest to Involve the Law' presented at UK Forum for Genetics and Insurance - Royal Society, London, London, 2000
Graeme Laurie 'Genetics and Patients Rights - Where are the Limits' presented at World Health Organisation (European Partnership on Patients Rights and Citizens Empowerment), Jerusalem, 2000
Graeme Laurie 'Explorations in the Legal Limits of Regulating Familial Genetic Relationships' presented at Genetical Knowledge, Prediction of Health and the Provision of Long Term Care - Ethical, Technical and Economic Issues, Royal Society of Edinburgh, 2000
Graeme Laurie 'The Legal and Ethical Implications of Life Extension Techniques' presented at Nanobiotechnology, Life Extension and the Treatment of Congenital and Degenerative Disease, Institute of Nanotechnology, 2000
Intellectual Property Law
- Dr Gillian Black
- Ms Jane Cornwell
- Dr Smita Kheria
- Professor Hector MacQueen
- Mr Gerard Porter
- Professor Burkhard Schafer