On these pages we honour the intellectual contributions of our esteemed colleague and dear friend, Ken Mason, in the broad field of medical jurisprudence. We invite short academic posts up to 1,000 words that are inspired by Ken Mason’s writing in the field. Anyone who knew Ken or has been influenced by his work is welcome to submit a proposal to Graeme.Laurie@ed.ac.uk.

Ken Mason was an Honorary Fellow in the School of Law at the University of Edinburgh for 32 years, from 1985 until his death on 26 January 2017. Even before joining the School of Law officially, Ken was publishing significant contributions in medical law and ethics during his time as Regius Professor of Forensic Medicine, also in Edinburgh, from 1973-1985. During that early period he established honours and masters courses in medical jurisprudence with his colleague Alexander (Sandy) McCall Smith, and this work formed the basis of their textbook, Law and Medical Ethics, that was first published in 1983. It was the first such textbook of its kind in the United Kingdom and helped to establish Ken Mason has an unassailable founding father of the discipline in the UK. The book has been used by multiple generations of undergraduate and postgraduate students since its first appearance, and many of Ken’s former students offer contributions on these pages that speak of the ways in which Ken and his intellectual ideas have inspired them.

Ken Mason was a prodigious scholar. He was fascinated by all aspects of medical law and ethics, which in Edinburgh we call Medical Jurisprudence. This both reflects the historical links between medicine and law that have existed in our institution since the 18th century, and also captures the idea that our field transcends disciplines and requires input across different specialities to make genuinely influential contributions. While Ken’s command of the law was often superior to that of many of his legal colleagues, his interests were particularly engaged by reproduction & the law, as well as by end-of-life issues. True to form, however, Ken was always open to changing his mind. It was not unusual from one academic year to the next for colleagues to be wrong-footed by a 180-degree volte face by Mason on any given topic! On more than one occasion, he declared himself a feminist - as much to his own surprise as to anyone else’s.

Still, Ken often professed to having a ‘bee in his bonnet’ about stubborn issues and questions in medical jurisprudence. In particular, we recall the following:

- he strongly supported the view that a mature minor should not be allowed to refuse treatment, even is she has capacity to consent (Gillick)

- he took issue that that law affords the fetus ‘no rights’;

- he was vexed by the ‘individualistic’ turn in medical law, and was drawn to notions such as relational autonomy;

- he often called himself a communitarian, and he was intrigued by areas of law and ethics that reflected this idea;

- he was engaged by assisted dying legislation, especially on what would count as adequate safeguards and whether medical practitioners should be involved;

- he insisted that death was a process, and not a moment, and he was frustrated by law’s failure to reflect this: this has implications for his view on transplantation;

- he vehemently disagreed with the rule that you cannot recover for the birth of a healthy child even when there is negligence;

- he would have been fascinated by the current revisitation of the 14-day rule in embryo preservation and use.

You will find contributions here that reflect these and many other of Ken Mason’s ideas. As stated above, we welcome contributions from anyone who knew him or his work. As a reminder, here are some links to Ken’s contributions to medical jurisprudence over the years as well as to other examples of the work of people who have honoured him:

-Ken Mason's publication list on Edinburgh Research Explorer

-Ken Mason’s monograph, The Troubled Pregnancy (CUP, 2007)

-Ken Mason’s festschrift, First Do No Harm (SAM McLean (ed), Ashgate, 2006)

We will continue to populate this site with contributions as and when the come in. We will alert audiences via the Mason Institute and its Twitter account @masoninstitute.

If you would like to contribute, please contact Graeme.Laurie@ed.ac.uk

If you would like to become a member of the Mason Institute, please contact Annie.McGeechan@ed.ac.uk

If you would like to leave a message of condolence, please visit the official site here: www.inmemoryofkenmason.law.ed.ac.uk

Please scroll down this page to read our latest blog posts.

Tuesday, 14 March 2017

Is there any reason in principle why we should not own our personal data? Revisiting ‘Consent or Property? Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey’ by JK Mason and Graeme Laurie

By Leslie Stevens, School of Law, University of Edinburgh

In 2001, in the aftermath of the Bristol and Alder Hey organs scandal, Professor JK Mason and Professor Graeme Laurie posed thought provoking arguments around the possibility of a mixed-model of regulation around uses of human tissue and organs. In ‘Consent or Property? Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey’[1] Mason and Laurie critically evaluated the shortcomings of the consent model when applied to the use and storage of organs and human tissue and considered the extent to which a properly conceived property model could work as a necessary and valuable adjunct to the obtaining of informed consent. Since the time of their article, the Human Tissue Act 2004 was passed placing primacy in the obtaining of ‘appropriate’ consent prior to any use or storage of a deceased person’s body (or material obtained from their body) other than for anatomical examination,[2] representing ‘… a lost opportunity to look at the law and the body as a whole.’[3] In their article, Mason and Laurie persuasively argue cogent reasons why a property model applied to the human body can facilitate further and better respect for individuals’ autonomy.

More than a decade and a half later, in my work with Professor Laurie on the Administrative Data Research Centre Scotland project[4], similar questions have arisen as to the efficacy of the consent model, but in particular, the consent-or-anonymise paradigm at work in context with the use of personal data for research purposes.[5] Other work has considered the prospect of a property model in an effort to provide individuals with more control over their personal data, attracting robust arguments both for and against this idea.[6] Even if the law in the UK currently eschews any idea of personal ownership, we cannot ignore the thriving black market for personal data across the globe as a result of the increasing sophistication of technologies and methodologies used by cyber criminals, or indeed the billion dollar businesses which arose from the intermix of code and ‘freely’ given personal data for various ‘services’. What values do we hold in personal data that may make propertisation objectionable? Do those values change once data are ‘anonymised’ or ‘de-identified’?

In the two decades since the enactment of the Data Protection Directive 95/46/EC, personal data has become commoditised and is an essential asset to public, private and third sector organisations. While data has become infinitely more valuable, the protection of privacy and the safeguarding of individual autonomy has concomitantly become more difficult to attain. The meaningless of ticking a box to consent has at once become a cliché of modern life but also represents the stark power imbalances between individuals and those that continue to collect, hold and process our personal data.

The forthcoming General Data Protection Regulation has been lauded as a marked improvement in data protection law, offering individuals’ more ‘control’ over their personal data, notably through the introduction of new or expanded data subject rights including the right to data portability, the right to be forgotten and with the heightened requirements for obtaining valid consent. However, many of these new or expanded rights are limited and do not address the fundamental power imbalance between a data subject and a data controller. Data controllers are still in ‘control’ – they remain free to determine the legal basis, purpose for, and manner in which, they will process personal data. Enhanced legal requirements for obtaining valid consent does not address this nor does it recognise sufficiently the economic value in an individual’s personal data. If data controllers continue to reap such high economic value from personal data, and moreover, in light of the risks posed by the growing prominence of data breaches, why can’t individuals assert and exercise a form of ownership over their data to compensate?

Data protection law effects a relationship with individuals primarily based on ‘rights’, despite the fact that the provisions of current and forthcoming legislation facilitate the transfer of personal data, often for economic exploitation. This is a fact just as it is also true that personal data holds an intrinsic value to personhood. A property model could provide individuals with actual control over certain economic uses of their data in recognition of the value that it represents in today’s economy. Yes, commercialisation of personal data could lead to more exploitation, but as argued by Mason and Laurie in relation to human tissues and organs: ‘… merely because we face that prospect is no reason in se to refuse to recognise property rights as a matter of principle…Indeed, the non-recognition of property rights arguably perpetuates exploitation; it has, for example, done little, to date, to prevent a thriving global black market in organs and tissues.’[7]

So to answer the question posed by the title of this blog, I would suggest that there is no reason in principle why a property model working alongside data protection (and privacy laws) could offer individuals further respect and control over their personal data, data which reaps such value for data controllers (and even criminals) across the globe. At a time of political, social and economic uncertainty, the time is ripe to rethink the relationship between the law and personal data.

[1] JK Mason and GT Laurie, Consent or Property? Dealing with the Body and Its Parts in the Shadow of Bristol and Alder Hey (2001) 64 The Modern Law Review 710 <http://dx.doi.org/10.1111/1468-2230.00347>.
[2] Human Tissue Act 2004, s 1.
[3] Mason and Laurie (n 1) 729.
[4] Administrative Data Research Centre Scotland <http://adrn.ac.uk/centres/scotland>.
[5] Graeme Laurie and Emily Postan, Rhetoric or Reality: What Is the Legal Status of the Consent Form in Health-Related Research? [2012] Medical Law Review; Graeme Laurie and Leslie Stevens, Developing a Public Interest Mandate for the Governance and Use of Administrative Data in the United Kingdom (2016) 43 Journal of Law and Society 360; Graeme Laurie, Liminality and the Limits of Law in Health Research Regulation: What Are We Missing in the Spaces In-Between? [2016] Medical Law Review 1.
[6] Julie E Cohen, Examined Lives: Informational Privacy and the Subject as Object (2000) 52 Stanford Law Review 1373; L Lessig, Code (Basic Books 2006); Nadezhda Purtova, Property in Personal Data: A European Perspective on the Instrumentalist Theory of Propertisation <http://www.ejls.eu/6/84UK.htm>; Marc Rodwin, Patient Data: Property, Privacy & the Public Interest [2010] American Journal of Law and Medicine; Jacob M Victor, The EU General Data Protection Regulation: Toward a Property Regime for Protecting Data Privacy (2013) 123 Yale Law Journal 513.
[7] Mason and Laurie (n 1) 727.

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