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, 25 April 2017

Taking up the Ken Mason baton: organ transplantation and defining death

By Murray Earle, School of Law, University of Edinburgh

I arrived in Edinburgh in 1993, with the intention of completing a one-year taught LLM degree. The fact that I am still here is in no small part due to the intellectual seeds that were sown that year, by Ken Mason and Sandy McCall Smith, who led some very lively and engaging discussions in medical jurisprudence. They were to go on to jointly supervise my PhD thesis in informed consent – an area of the discipline that was at the time in danger of being academically overworked, but which has enjoyed something of a revival with the decision in Montgomery v Lanarkshire Health Board from the Supreme Court in 2015.[1]

Towards the end of that first year, I saw Liz Lochhead’s play Mary Queen Of Scots Got Her Head Chopped Off, at the Lyceum Theatre. Written in Scots, the play was accessible because of the many Scots words that are still in common usage. ‘Ken’, I had already mused, is transitive of ‘to know’ – and to my great benefit had taken on the personified causative form of ‘to make known’.

That is what Ken constantly undertook: as well as a prodigious publications list, he was always committed to teaching. His method was Socratic, posing consistently challenging questions so that arguments and points of view would emerge through discussion and debate.

The baton that Ken passed to me came in the form of an update to his chapter in Principles of Medical Law, for the 4th edition.[2] On learning from his invitation to ‘take over’, of his anxiety to ‘keep it in the family’, I experienced that odd combination of honour and gratification – and absolute anxiety that the shoes I was set to fill were several sizes too spacious.

As well as updating the case law, Ken listed what he called ‘snags’, but which I preferred to understand as comprising the baton being passed. He insisted that while death may be a process rather than an event, it is an ‘absolute’ state, and that a chapter that carries the title ‘Death’ should not contain a substantive discussion of topics like the permanent vegetative state, the minimally conscious state, nor indeed organ transplantation. And so, my first task in continuing Ken’s legacy turned out to be a kind of editorial diplomacy. Despite the undeniably pleasing ‘well done!’ from Ken, it was the willingness of others – in particular Professor Jonathan Herring – that secured the location of many of those topics in the chapter ultimately called ‘Ending Life’.

It is to Ken’s credit that there are many readers that are now able to see and understand the links among and between these different topics, as well as their most fitting location.

My next task was less straightforward.

Among the few issues that Ken wanted to discuss in detail was the ‘agonal period’, between somatic and cellular death, which has not benefitted from a wealth of legal attention, but which has significant implications for transplant medicine.

We were agreed on two critical issues: that despite editorial exclusion in Principles, transplantation and death are intertwined subjects;[3] and that to distinguish between types of death involves a misconception that runs counter to our understanding of death as an absolute state. That misconception would hold that the type of death accepted as definitive (cardio-respiratory and brain-death), is determined by the utility of that diagnosis. This would have the dangerous consequence of placing the transplantation needs of others ahead of the diagnosis of the primary patient.

There may not be different types of death, but before that absolute anoxic state is reached, and during the process that has death as its culmination, a person may be in a number of different states (rather than stages which suggest a defined sequence of events). This, however, is a medical understanding. Legally and socially, an identifiable time is required that marks the occurrence of death.

The cellular tissues of the brain are distinguishable from all other tissues by their capacity for cognitive function and their incapacity to regenerate. If our definition of ‘life’ is dependent on cognition, then ‘death’ must be dependent on its absence.[4] This final period in a person’s life marks a transition between a status deserving of respect for the person, to one of respect for the corpse. This underlines the call for a legally identifiable watershed moment. This is to be contrasted with the medical reality that death, or at least natural death, is a process not an event.

The often brief liminal period between brain and cellular death can be extended by artificial cardio-respiratory systems, giving rise to the (brain-stem dead) ‘beating heart organ donor’, and which raises the utilitarian controversies already mentioned. The usefulness to transplantation medicine of organs that have remained well oxygenated, is undeniable. It is also only possible with reliance on brain-stem death as the criterion for ‘death’ to have legal effect.[5]

The conflation of organ procurement provisions and diagnostic criteria is ethically troublesome, and open to confusion. Can the use of neurological criteria truly be dissociated from the pragmatics of organ procurement, when individuals diagnosed as ‘brain-dead’ are the source of the organs without which transplants cannot take place,[6] and when brain death and brain-stem death are often used interchangeably? If we accept the pervasiveness of the neurological criteria for death, and most crucially its reference to irreversibility, will that involve the moral acceptance of the utilitarian perspective of deriving some good from a life that cannot continue?

The very use of the words ‘cannot continue’, must admit the view that this life has not yet ended, albeit that life is being artificially sustained, the biologically inevitable process of death held in abeyance at its threshold. During that period a person has not, in the views of many including Ken Mason, achieved the end of the process, and any definition or definitive criterion that casts its net widely enough to include those people, does so to the valid criticism of many.

There are those who hold that the term ‘death’ should only be applied to those whose heart has ceased beating, and that those diagnosed as brain-dead have not died in the accepted cardio-vascular sense, but are in a ‘near death’ state and should be legally available as organ donors.[7] This, according to Miller et al, requires the acceptance of the ‘moral fiction’ that, ‘[d]onating vital organs is believed to be ethical only insofar as it conforms to [the Dead Donor Rule].’[8] That, in turn, raises the question of whether the donor is in fact dead, when the artificially ventilated brain-dead patient is still able to perform a range of integrated biological functions such as temperature control and the metabolising of food. If the patient is dead only in the sense of the irreversibility of their artificially-maintained vital functioning, and examples exist of patients resuscitated following asystole, the argument may be advanced that the condition is ‘irreversible as a matter of intention rather than as an unalterable fact.’[9] The legal fiction, then, justifies the patient’s death as resulting from their underlying medical condition. It also exposes the need to distinguish brain-death from brain-stem death, as thermoregulation is impaired in the latter state.

And yet it is impractical in the clinical setting to fulfill the neurological diagnostic criteria to establish the absence of higher brain function following cardio-respiratory collapse, which may go some way to explain why the available guidance – at last in the United Kingdom – is not based on brain function, but on the possibility of auto-resuscitation.[10] The lack of standardisation and guidance is an issue that vexed Ken, not least due to the variation, internationally, in the required period between anoxia and cessation of brain function (ranging from two to fifteen minutes) that will justify non-heart-beating organ donation. The protocols developed are applicable to ‘planned decisions to withdraw life support’, and involve the legal fiction already considered.[11]

It has been argued that brain death has, since its introduction in 1965, had the ‘principal’ and statistically successful aim of facilitating organ transplantation.[12] Its acceptance also paved the way for the Uniform Determination of Death Act 1980 in the United States,[13] which uses irreversible cessation of the whole brain in the alternative to irreversible cessation of circulatory and respiratory functions to determine that death has occurred. Avoidance of the confusion of diagnosis of death and organ procurement will require an understanding that artificially maintaining cardio-respiratory function merely slows the pace of assessment and prognosis, such that a diagnosis of brain-stem death merely confirms what is already known from clinical observation.

As well as those questions already raised in this blog post, further issues are open for exploration through future research:

What do we mean by ‘law’s failure to reflect that death is a process’ – a failure that frustrated Ken?

Would legal recognition mean a return to a triadic definition of death?

Would a consequence of that approach be to reduce further the number of viable organs available for transplantation, just as the use of brain-stem criteria is able to increase that number?

End-of-life issues other than the procurement of organs for transplantation also arise. Some of these issues may, or even should, involve broadening our notion of the liminal period between life and death, to include those with a terminal prognosis, yet not requiring artificial cardio-respiratory support. During that period – be it leading to a permanent vegetative state or a minimally conscious state,[14] or during a terminal disease stage in which legal capacity may or may not be compromised – there is a call for a greater understanding of that person’s preferences as to their care.[15] This raises questions of how those preferences are known, whether the patient and their family have been consulted, and whether current guidelines are in line with the case law.[16]

I certainly look forward to running with the baton that has been passed by Ken Mason.


[1] Montgomery v Lanarkshire Health Board [2015] UKSC 11 https://www.supremecourt.uk/decided-cases/docs/UKSC_2013_0136_Judgment.pdf
[2] Judith Laing and Jean McHale (Eds) Principles of Medical Law (4ed). Oxford University Press. 2017. https://global.oup.com/academic/product/principles-of-medical-law-9780198732518
[3] On the relationship between the definition of death and organ transplantation, see S D Shemie, ‘Clarifying the paradigm for the ethics of donation and transplantation: was ‘dead’ really so clear before organ donation?’ (2007) 2 Philos Ethics Hummanit Med 18.
[4] Academy of the Medical Royal Colleges. A Code of Practice for the Diagnosis and Confirmation of Death. London, 2010. http://www.aomrc.org.uk/publications/reports-guidance/ukdec-reports-and-guidance/code-practice-diagnosis-confirmation-death/
[5] See Human Tissue Act 2004, s.43 on maintaining and preserving bodies prior to transplantation
[6] Margaret M Lock, Twice Dead: Organ Transplants and the Reinvention of Death. University of California Press. 2001.
[7] R D Truog, and W M Robinson, ‘Role of Brain Death and the Dead- donor Rule in the Ethics of Organ Transplantation’ (2003) 31 Crit Care Med 2391.
[8] F G Miller, R D Truog, and D W Brock, ‘The Dead Donor Rule: Can It Withstand Critical Scrutiny?’ (2010) 35 J Med Philos 299– 312
[9] Ibid.
[10] Code of Practice for the Diagnosis and Confirmation of Death, Academy of Medical Royal Colleges (2008), and An ethical framework for controlled donation after circulatory death. Academy of Medical Royal Colleges (2011).
[11] S K Shah, R D Truog, and F G Millar, ‘Death and legal fictions’, (2011) 37 J Med Ethics 719-22 and S K Shah and F G Millar, ‘Can we handle the truth? Legal fictions in the determination of brain death’ (2010) 36 Amer J Law Med 540.
[12] I H Kerridge et al, Death, dying and donation: organ transplantation and the diagnosis of death, (2002) 28 J Med Ethics 94
[13] United States Uniform Acts, Uniform Determination of Death Act 1980: www.lchc.ucsd.edu/cogn_150/Readings/death_act.pdf
[14] Vegetative and Minimally Conscious States, Parliamentary Office of Science and Technology Note, March 26, 2015. http://researchbriefings.parliament.uk/ResearchBriefing/Summary/POST-PN-489
[15] Our Commitment to you for end of life care. The Government Response to the Review of Choice in End of Life Care. Department of Health. July 2016.
[16] Tracey v Cambridge University Hospital NHS Foundation Trust [2014] EWCA Civ 822 https://www.judiciary.gov.uk/wp-content/uploads/2014/06/tracey-approved.pdf

Tuesday, 18 April 2017

Case commentary: R v Tsekiri[1]

By Karen Richmond, Postgraduate Research Student (Law), University of Strathclyde

This post is inspired by Ken Mason's Forensic Medicine for Lawyers that rekindled the author’s interest in forensic science and medicine: an influence which continues to direct her research interests.

In his 2014 Kalisher lecture, the Lord Chief Justice expressed concerns regarding the potential of new, or complex, scientific developments to tarnish the status of forensic DNA profiling. Lord Thomas identified the 'challenge for all…advocates and judges – to manage the presentation and testing of forensic evidence in such a way as to avoid fatally undermining confidence.’[2] The judiciary’s concern to maintain public confidence in this forensic keystone is well founded, given the unparalleled discriminatory potential of DNA profiling techniques, and their unique ability to link the bio-identity of suspect populations to an ineradicable bodily substrate. Indeed, a glance at recent news stories would suggest that the LCJ’s challenge has been met, and that the reputation of DNA profiling – as the ‘gold standard’ of forensic identification tools - remains secure.

Nonetheless, the persistent presence of these overarching concerns may go some way to explain the decision in R v Tsekiri [2017] EWCA Crim 40 . In this case the Court of Appeal of England and Wales addressed the problematic issue of DNA ‘transfer and persistence’. The facts are as follows: In June 2016, a Ms. Carr unlocked her car. At this point, an unidentified man attempted to enter the vehicle. A brief struggle ensued, and the man escaped, with Ms. Carr’s gold necklace. Swabs were taken from the exterior door handle of the vehicle and these revealed a mixed DNA profile. The profile belonging to the major contributor was consistent with that taken from the appellant (with a match probability of 1:1 billion). There was at least one other minor contributor. The reporting scientist could reach no determination as to when the major components of the mixed DNA profile had been deposited, nor their source. The deposit could have been due to that person touching the door handle, or due to indirect secondary transfer through an intermediary (though the reporting scientist considered this unlikely, given that the DNA in question was the major contributor to the profile). The appellant submitted that there was no case to answer given the dearth of evidence.

Held (Lord Thomas, LCJ): Where a defendant's DNA profile - recovered at the scene - is the only evidence, that evidence is sufficient to raise a case to answer, provided the match probability is in the order of 1:1 billion. Sufficiency will depend on the facts of the case. The court provided a non-exhaustive list of relevant factors to be taken into account:

-Can the presence of the DNA evidence be otherwise accounted for?

-Was the article apparently associated with the offence itself?

-How readily movable was the article in question?

-Is there evidence of some geographical association between the offence and the offender?

-In the case of a mixed profile, is the DNA profile which matches the defendant, the major contributor?

-Is it more or less likely that the DNA profile attributable to the defendant was deposited by primary, or secondary, transfer?

The court stressed the crucial point, ‘that there is no evidential or legal principle which prevents a case solely dependent on the presence of the defendant's DNA profile on an article left at the scene of a crime being considered by a jury.’[3]

Whilst the court’s decision may help to maintain confidence in the probative value of forensic DNA profiling techniques, it may be argued that the judiciary have purchased security at the price of accuracy. The case highlights a growing problem for DNA profiling experts, whose technologies are now so sensitive that they routinely report ‘mixed’ samples, including deposits made indirectly through intermediate contacts, and low-template DNA shed naturally by individuals and spread through contact and dispersal. In many cases, scientists can de-convolute mixed samples using their expertise, often with the aid of complex computer algorithms. The de-convoluted results may reveal a major contributor, and one - or more - minor contributors, all of whose profiles may be complete, or partial.

However, the evaluative problems are not limited to attribution. Whilst individual profiles may be ‘matched’ to individuals on the DNA database - with probabilities in the order of 1:1 billion - the resulting evidence may be effectively neutralised by the issue of the transfer and persistence of DNA deposits across multiple surfaces. The interposition of such issues shifts the focus of analysis, such that the courts should no longer address themselves to the question of ‘to whom does this DNA sample belong?’ The salient question becomes: ‘how did this DNA sample come to get here?’[4]

Given that different individuals shed epithelial ‘touch’ DNA at different rates; that different surfaces retain DNA at different rates; and that DNA may be deposited by secondary, or even tertiary, intermediaries (not to mention the presence of environmental factors); the task of answering activity propositions with any degree of certainty may prove difficult, if not impossible.[5]

The problem, then, is encapsulated in this excerpt from a research interview with a lead DNA profiling scientist. She considers a hypothetical situation based on the analysis of a profile recovered from a pair of gloves left at the scene of a robbery. The suspect claims that the gloves are his, but that they were borrowed by another individual:


‘So now, the question is, “how did the DNA get there?”And now all of the source attribution evidence is completely irrelevant. And, [for any suggested explanation], the reason that DNA matching him is on the gloves is because he wore them, but I can’t tell you when he wore them, when was the last time he wore them, when his DNA was deposited, and in some cases, if it’s very weak, I can’t even tell you whether he deposited his DNA or if it went there through another individual or surface. It varies from individual to individual as well as condition to condition, surface to surface. The suspect could have been wearing them every day and he’s still only a minority contributor…You cant ‘weight’ transfer and persistence.’[6]

The above concerns are supported by laboratory studies, which demonstrate that DNA, deposited on an object as a result of secondary transfer, is frequently identified as either the only contributor, or the major contributor, to a mixed profile, despite the contributing individual never coming into direct contact with the object. [7]

Such studies illustrate the risks of assuming that DNA, recovered from an object, results from a direct contact. They also cast doubt on the Court of Appeal’s approach to such issues, given that the latter are effectively attempting to weight transfer and persistence. Indeed, further questions are raised as to whether it was possible for the court in Tsekiri to arrive at strong assertions, such that ‘there can be no doubt that the offender did touch the article in question.’ Further, studies would appear to confound the bare proposition that ‘secondary transfer was an unlikely explanation for the presence of the appellant's DNA on the door handle.’ Nor does the connection between the suspect and a particular geographical location necessarily aid determination, since such a connection may be equally supportive of secondary transfer scenarios.

The failure of the courts to take this opportunity to address the pressing problem of DNA transfer and persistence is perhaps understandable, given that the evidence in the above case was not subject to rigorous cross-examination. However, both practitioners and the courts should be aware of the issues involved, alive to the importance of context, and wary of attempts to collapse the question of ‘how’ into the less scientifically problematic question of ‘who?’

Whilst there may be a number of economic, policy, and procedural reasons for such an approach - centering on the perceived necessity to maintain the unblemished status of forensic DNA - attempts to evade the pressing question of transfer and persistence may provide only temporary security for accused persons and society alike.


[1] R v Tsekiri [2017] EWCA Crim 40 (17 February 2017) ;
URL: http://www.bailii.org/ew/cases/EWCA/Crim/2017/40.html
[2] The 2014 Criminal Bar Association Kalisher Lecture: Expert Evidence: The future of forensic science in criminal trials. The Right Hon. The Lord Thomas of Cwmgiedd. 14th October 2014
URL: https://www.judiciary.gov.uk/wp-content/uploads/2014/10/kalisher-lecture-expert-evidence-oct-14.pdf
[3] R v Tsekiri [2017] EWCA Crim 40 at 21
[4] Taroni F., Biedermann A., Vuille J., Morling N. (2013). Whose DNA is this? How relevant a question? (a note for forensic scientists). Forensic Sci. Int. Genet. 7, 467–470
[5] Despite rigorous attempts to provide coherent data in respect of DNA transfer and persistence, research is sporadic, and results lack meaningful generalisability. See, for example: C. Davies, et al., Assessing primary, secondary and tertiary DNA transfer using the Promega ESI-17 Fast PCR chemistry, Forensic Sci. Int. Gene. Suppl. (2015)
URL: http://dx.doi.org/10.1016/j.fsigss.2015.09.022
[6] Interview with DNA lead scientist (Tier 2 forensic science provider). Oxford, 2015.
[7] Cale CM, Bush GL, Earll ME & Latham KE (2016) Could Secondary DNA Transfer Falsely Place Someone at the Scene of a Crime? Journal of Forensic Science, January 2016;61(1): pp.196-203.


Tuesday, 4 April 2017

Rigorous and Incisive, but a Humanist First!

By Shawn H.E. Harmon, School of Law, University of Edinburgh

While I did not have the close relationship with Ken Mason that some of my colleagues had, nor as close a one as I might have liked and could possibly have cultivated, I did have the sincere privilege of interacting with Ken in multiple capacities. Ken was my teacher; he taught on my Medical Jurisprudence LLM course, challenging us intellectually while making us tea and distributing biscuits.
Ken was my interviewer; he participated in the telephone interview for my first Research Fellowship. It took place in mid-December, and he persevered in good humour through a poor trans-Atlantic connection that was persistently interrupted by an unknown party talking to another unknown party about Christmas trees.
Ken was my examiner; he was the internal for my PhD viva which included externals Roger Brownsword and Nils Hoppe. This was an intimidating panel if ever there was one. But, disinclined to ease us into the process, Ken opened with a typically direct question about the difference between values and principles, a matter foundational to my work and having the potential to unravel the thesis. The look of dismay on the other faces was visible, less so for it being asked than for its timing, one suspects, but the question, posed early, led to a robust discussion, and a thoroughly enjoyable viva; and in the end, to a PhD.
Ken was my colleague; from my hiring by Edinburgh in 2005 to the time of his retirement, he sat a floor above me in Old College, though much, much higher in the tower of thought.[1] I am reminded of the tribute paid to country music icon, Hank Williams, by the great Canadian poet and lyricist, Leonard Cohen:[2]
I said to Hank Williams: How lonely does it get?
Hank Williams hasn't answered yet,
But I hear him coughing all night long,
A hundred floors above me,
In the Tower of Song.
While Cohen’s place in the Tower was certainly understated (a rare example of modesty), my own place many stories below Ken in our own Tower is not contested. Ken was a towering intellect who worked his way to the top of three careers. Nonetheless, and despite my trepidation, I would like to engage ever so briefly with one of the bees in Ken’s bonnet, and one that I share in some measure.
Ken was vexed by the ‘individualistic’ turn in medical law and ethics. He argued that Principlism, the then and still dominant ethical decisional framework:
… is overly concentrated on the individual – and a markedly hedonistic individual at that. The second and third principles do little other than restate the obvious and are frequently in conflict. Perhaps the most extreme example is that of reduction of multiple pregnancy – whether you are doing harm or good depends very much on whether you look on it from the point of view of a foetus that is to be eliminated or of one that is to be preserved. The conflict appears in more practical circumstances in the context of euthanasia. On the one hand, the principle of non-maleficence tells us, at least in deontological terms, that killing is a prima facie wrong. On the other, freeing a patient from intolerable pain could reasonably be seen as beneficence. Principlism has not taught us what is right but, as with any theory of ethics, it has shown us a different way of justifying a particular decision. Inevitably, the answer as to whether it was right or wrong is left to the individual’s morality, which means that what is right is what is right in the mind of the decision maker.[3]
In the same paper, he confessed to being attracted to a communitarian ethos, which he saw as promoting the good of the community.
This, of course, begs the question, what community?
In arguing that we must more consistently realise solidarity with others, I have claimed that we must pay attention to the whole human community; it is the global community that we ought to think about when making decisions around healthcare research and health technology development,[4] and indeed around other welfare-supporting elements such as water (where I have jointly advanced a public interest approach to water management).[5] A more inclusive idea of community is important in the modern setting where our risks and technologies are cross-border and global: the technician in Argentina, the physician in Nigeria, and the patient in China are not so remote anymore. If we are to achieve solidarity and adopt more joined-up policies (around health and innovation and access to medicine), then we must forge a sense of community that is much broader than we have historically bothered ourselves with.
Of course, Ken would rightly reject such a broad community of interest when considering the more coal-face clinical setting, with which he was primarily interested. He suggested that the community must be defined as those persons who will be affected in some way by a decision.[6] In the clinical setting, this will often be the patient, his or her family, the treating healthcarers, and potentially other patients, either like or unalike and competing for finite health resources. But I am confident that while we might argue about the breadth of the community in specific contexts, Ken and I would probably agree that all health-related decisions and policies certainly implicate a wider collection of people than our dominant autonomy-centric processes typically permit. It also invites more squarely, I would argue, considerations of compassion and other duties because the interest of the community and its constituents must be considered in relation to the patient. One could also argue that a more inclusive or community-cognizant approach to medical law, ethics and decision-making imposes on actors a more obvious responsibility to be transparent, which was frequently a concern of Ken’s. This more inclusive and sensitive approach to decision-making finds support in Eastern notions of filial piety and family consent practices, and certainly influenced the work of Lõhmus,[7] who studied under Ken. She advocated the idea of ‘caring autonomy’, which she defines as sensitive to relations and interdependence and as engaging with the ethic of care, the fulfilment of responsibilities demanded by certain relationships, and the interaction of vulnerability and trust.
Ken’s relational and communitarian perspective was undeniably informed by his own deep valuing of life and its possibilities, and his recognition of interconnectedness, both of which were almost certainly shaped by his personal history as a military man and a doctor, and it was accompanied by a demand that our decisional frameworks and rules sufficiently reflect the multiple relations and obligations that shape our individual reality. Indeed, this deep valuing of life and the significance he attached to connections is apparent in his monograph, The Troubled Pregnancy.[8] His humanitarian or humanist perspective demands a much deeper and more consistent and holistic engagement with both the broad and the individual human condition than we typically adopt in either policy or individual decision settings. It similarly demands a more sensitive approach to people and their sphere of influence than the law typically acknowledges (as demonstrated through Lõhmus’ examination of autonomy litigation under Article 8 of the European Convention on Human Rights[9]). In this respect, Ken was fairly consistently dissatisfied with the law and medical ethics, and he persistently critiqued them for their failure to adequately advance an ethic of care, particularly in matters strongly characterised by vulnerability.[10]
Ken’s general sensitivity to the human element in medico-legal disputes, and the human side of the law (reflected ever so elegantly in his teaching style), is apparent in his own celebration of a friend and colleague, Margot Brazier. After discussing her position on autonomy, he observes, in the penultimate paragraph, as follows:
Circumstances in the medico-legal field are seldom, if ever, identical; it would be idle to suppose that we must, or can, achieve a uniform response to individual challenges. The first half of this article was dealing with the somewhat arid subject of patients’ rights; the second is almost entirely about human relationships. There is no reason why the two sides of Professor Brazier—the lawyer and the humanitarian—should not appear equally brightly. Indeed, we may ponder as to whether she has not introduced us to a new construct of autonomous humanity.[11]
I contend that these sides – the legal and the humanitarian (or humanist) – were equally apparent and brightly articulated in Ken’s work.[12] And while I cannot conclude as he did – “Keep writing, Margot!” he urged – his extensive and erudite body of work reminds us that the law and medicine are there to serve individuals, families, communities, and society. They are meant to serve as institutions for the wellbeing and the flourishing of people, and they should consistently remind us to pursue such wellbeing and flourishing as we pursue our various endeavours. Ultimately, Ken might fairly be characterised as a ‘humanist’, and if we embrace this sensitive and care-grounded perspective, then Ken’s body of work will surely serve us all well into the future.

[1] I hesitate to use the phrase ‘ivory tower’, which evokes images of remote pontification. Neither Ken nor anyone within our Edinburgh medical law and ethics team believe that we occupy such a place, or should. Given his vast and diverse experience, Ken was, I believe, keenly aware of the practical and purposive nature of the law, and of the need to engage with it on many levels, including the messy coal-face, to achieve the justice that it promises.
[2] L Cohen, ‘Tower of Song’, on I’m Your Man (1987; Columbia Records).
[3] K Mason, ‘Ethical Principles and Ethical Practice’ (2006) 1 Clinical Ethics 3-6, at 3-4.
[4] S Harmon, ‘Solidarity: A (New) Ethic for Global Health Policy’ (2006) 14 Health Care Analysis 215-236. For more on solidariy, see S Harmon and A McMahon, ‘Banking (on) the Brain: From Consent to Authorisation and the Transformative Potential of Solidarity’ (2014) 22 Medical Law Review 572-605, and B Prainsack and A Buyx, Solidarity in Biomedicine and Beyond (Cambridge U Press, 2017).
[5] S Harmon and J Graham, ‘Water, Health and Social Justice’, April 2017, Impact Ethics, at https://impactethics.ca/.
[6] Mason, note 3.
[7] K Lõhmus, Caring Autonomy: European Human Rights Law and the Challenge of Individualism (Cambridge U Press, 2015).
[8] K Mason, The Troubled Pregnancy: Legal Wrongs and Rights in Pregnancy (Cambridge U Press, 2007).
[9] Lõhmus, note 7.
[10] See G Laurie and K Mason, ‘Trust or Contract: How Far Does the Contemporary Doctor-Patient Relationship Protect and Promote Autonomy?’ in P Ferguson and G Laurie (eds.), Inspiring a Medico-Legal Revolution (Ashgate, 2016), and others.
[11] K Mason, ‘Autonomous Humanity? In Tribute to Margaret Brazier’ (2012) 20 Medical Law Review 150-156, at 156.

[12] For an example of this, see S Mclean and K Mason, ‘Our Inheritance, Our Future: Their Rights?’ (2005 ) 13 International J of Children's Rights 255-272, or any of the editions of Mason and McCall Smith’s Medical Law & Ethics (Oxford U Press).

Scotland’s Turn Towards ‘Realistic Medicine’: What’s in a Name?

By Edward Dove, School of Law, University of Edinburgh


Unfortunately, I never had the honour, privilege and pleasure of meeting Professor Ken Mason, having arrived at the University of Edinburgh shortly after he stepped away from the Law School. Yet, through affectionate and humorous stories shared with me from Graeme Laurie and colleagues, I quite quickly came to understand the tremendous and memorable impact Ken had on people, on institutions and on disciplines. Upon Ken’s passing, Graeme inspired me to commemorate this kind, sage, admired Professor by writing a short piece on a topic about which he was vocal (and from what I hear, there were many such topics!). One topic was the ‘individualistic’ turn in medical law, which apparently rather vexed him. This is a topic which interests me – and sometimes vexes me as well – particularly in the context of autonomy and privacy, seen perhaps most starkly in human rights claims grounded in Article 8 of the European Convention on Human Rights. On this, Graeme, I and other colleagues in the Liminal Spaces Project explored in an article analysing an intriguing European Court of Human Rights case on the nature and scope of the right for relatives to consent to or to oppose the removal of a deceased person’s tissues. 

Continuing the topical thread on the ‘individualistic’ turn, of which Ken was a major sceptic, here, I want to explore Scotland’s inchoate turn towards something called ‘realistic medicine’. Given the brief space acceptable for a blog piece, I merely want to pose some critical questions for thought. After a brief overview of what ‘realistic medicine’ entails, I query whether it represents yet a further example of an individualistic approach in medicine, and also query what might be the impact on collective responsibility and provision of care by the state. Though I sincerely lament having never met Ken, one can only hope that this short piece serves in some way as a small but genuinely heartfelt token of gratitude and commemoration for this giant in medicine, law and ethics.

The dawn of ‘realistic medicine’ 

In January 2016, Scotland’s new Chief Medical Officer (CMO), Catherine Calderwood, introduced the concept of ‘realistic medicine’ in her first annual report. The impetus behind this concept is somewhat vague, but it seems to stem from perceived ‘times of challenge’ in the NHS, namely the ‘increase in demand for services in an age of austerity’ that ‘requires us to achieve more through better use of resources’. To this end, the CMO cited a 2015 Audit Scotland report that called for a ‘fundamental change’ in the way NHSScotland delivers services to cope with increasing demands for services and to increase the pace of change. Audit Scotland’s report was blunt in its assessment: 

Significant pressures on the NHS are affecting its ability to make progress with long-term plans to change how services are delivered. Tightening budgets combined with rising costs, higher demand for services, increasingly demanding targets and standards, and growing staff vacancies mean the NHS will not be able to continue to provide services in the way it currently does. Together, these pressures signal that fundamental changes and new ways to deliver healthcare in Scotland are required now.
If the impetus is financial austerity and increased demand in services, then what exactly constitutes ‘realistic medicine’? – and is it the right remedy for the identified challenge? In her 2016 report, the CMO identifies six aims behind ‘realistic medicine’: 

1) build a personalised approach to care; 

2) pivot to shared decision-making; 

3) reduce unnecessary variation in practice and outcomes; 

4) reduce harm and waste; 

5) manage risk better; and 

6) encourage health professions to become improvers and innovators. 

The aims are not explicitly underpinned by any delineation of principles (though reference is made to ‘principles of realistic medicine’ several times) or reference to statutes, so making sense of what realism in healthcare really means presents lawyers and ethicists with their own interpretive challenge. As the CMO’s 2017 annual report elaborates somewhat helpfully: ‘Realistic Medicine puts the person receiving health and care at the centre of decision-making and creates a personalised approach to their care. It aims to reduce harm, waste and unwarranted variation, all while managing risks and innovating to improve. These concepts will be essential to a well-functioning and sustainable NHS for the future.’ While seemingly focussing on the individual patient in the complex array of resource decisions to be taken, the statement also engenders several unanswered questions regarding values, vision and priorities.

Some strengths…

There are parts of the reports worth applauding – parts that I suspect Ken would also applaud. The CMO herself touts the ‘positive’ support for her 2016 report, stating that the Twitter hashtag #realisticmedicine reached ‘almost 10 million Twitter feeds a year after publication’. Foremost praiseworthy is the rejection of paternalistic communication patterns and instead the endorsement of the shift towards a shared decision-making approach between health professionals and patients. This instantiates the core message behind the Supreme Court’s 2015 ruling in Montgomery v Lanarkshire Health Board. Specifically, the CMO should be applauded for encouraging the NHS to develop a better understanding of people’s needs and the factors influencing how decisions are made and consent provided. As the 2017 report observes: ‘Central to this is the principle that the relational factors underpinning conversations about care need to support a partnership based on openness, trust and communication.’ However, whether this ‘principle’ forms a part of ‘realistic medicine’ itself is unclear, as is precisely what the principle comprises. 

Another aspect of ‘realistic medicine’ worth cheering is the recognition that there can be overtreatment of patients that causes waste in the health service system and harm for patients (something NHS England also recognises and is addressing). The reports note that this is disconnected from funding concerns – even if there was money in the NHS, overtreatment and waste are serious cause for concern. Laudably, the reports highlight efforts to realise this goal of reducing overtreatment and waste, including the proposed development of a single national formulary and a ‘Scottish Atlas of Variation’ to identify unwarranted variation in care.

…and some faults

However, there is also some room for concern. Reading the 2016 and 2017 reports together, two fundamental questions arise: first, what is meant by ‘realistic’, and second, realistic for whom? Notably, unlike the 2016 report, the 2017 report defines realistic as: ‘1. Having or showing a sensible and practical idea of what can be achieved or expected. 2. Representing things in a way that is accurate and true to life.’ This adjectival addition tacked on to medicine itself begs a question: is this about tailoring our expectations of what current and future healthcare can provide for citizens, or is this about tailoring healthcare to our expectations of what a sensible system of care should look like? If the former, might it mean that we should expect reductions in treatment and care given the dwindling resources available, and that we should take great individual responsibility for our well-being? How is the ‘representation’ of reality to be made, and by whom? If the latter, on what shared principles and values will realistic medicine be based – and what structural changes must be made to realise the vision? Moreover, if we are to turn towards ‘realistic medicine’, just what kind of medicine has been practised to date? 

Less clear still is for whom medicine should be realistic. Presumably, the CMO would respond: ‘realistic for everyone’ – patients, health professionals, regulators, and so on. Yet, it is far from clear that the goals set forth in these reports are realistic, much less ‘sensible and practical’, for each stakeholder. Will health professionals have the time and resources to engage in shared decision-making with patients, particularly if this involves saying No to patients seeking particular treatments? If ‘realistic medicine’ is about focussing on the ‘true value to the patient’, who will assess what this true value consists of, and what are the consequential effects on the needs and expectations of the patient, not to mention the taxpaying citizen? Will politicians be realistic in planning for the long-term stability of universal health and social care for an aging population that is incurring increased comorbidities that require social care just as much as healthcare? Indeed, it is worth noting that Scotland lacks a tradition of a whole-system approach to these social support structures, and there are on-going concerns about how this new health and social care integration will be delivered and managed. The specific concern here is that the ‘individual’ risks being characterised differently by two quite different systems, each concerned with its own priorities, limited budgets, and desire not to be overloaded.

What lies ahead?

It is in this conceptual and political haze that two practical worries emerge. First, there is apprehension that ‘realistic medicine’ serves as the latest trend in healthcare policy (akin to Wales’s ‘Prudent Healthcare’ movement) to advance the responsibilisation agenda of the individual patient – framed as consumer choice or a ‘personalised approach’ – but which comes at the expense of collective responsibility and solidarity. Here, I do wonder whether Ken would raise his eyebrows in scepticism. Does ‘realistic medicine’ represent a systemic improvement in care and greater respect for patients? Or, might it signal a further reduction of care to rational choice decisions premised on autonomous actors ‘taking responsibility’ for their own actions in an era of ostensibly increased consumer choice, but genuinely reduced public resources? To that end, might the new tone in medicine be: ‘I’m sorry – that’s just not realistic’? 

Second and relatedly, there is worry that ‘realistic medicine’ masks or disregards the underlying structural impediments to realising a healthy healthcare system – ongoing cuts to the NHS, long-term vacancies in health professions, competition between services, added pressure on doctors – that unless addressed with structural solutions, simply will lead to inevitable disappointment and further impairment of the NHS. 

Scotland is clearly charting a new path for the NHS. Let us watch and wait – but not passively – to see where this path may lead us. How may ‘realistic medicine’ be realised across Scotland in the coming years? One certainly hopes that it brings better care and respect for patients, better treatment of and respect for healthcare professionals, value for public money, and prevention of waste. At the same time, one hopes it does not produce further erosion of public trust, collective responsibility and social justice. I am confident that Ken, long dissenting of the individualistic turn in medicine, would share such a hope.

Tuesday, 14 March 2017

Continuing the Intellectual Legacy of JK Mason: From Autonomy to Vulnerability and Beyond


By Graeme Laurie, School of Law, University of Edinburgh

I first met Ken Mason in 1995 when I joined Edinburgh Law School as a junior lecturer in private law. I had previously read medical law and ethics at Glasgow University, the only institution at the time where it was possible to spend two years of Honours study specialising in the field. Ken Mason had been my external examiner. I had studied using his textbook, Law and Medical Ethics, published with Sandy McCall Smith, and then in its third edition. But I had never met Ken Mason, already a legend in medico-legal lore with a formidable intellectual reputation. I was nothing short of intimidated - for which read terrified - when I joined the Edinburgh staff. There was absolutely no cause for concern. In our first meeting to discuss teaching, Ken immediately put me at ease and invited me into the academic family: “What do you think we should do, dear boy?”, was one of his first questions to me. Such openness and generosity of spirit were so typical of Ken, and they came to define the relationship that we enjoyed for the next 22 years.

Ken and I had a lot of fights. We fought in his office and we fought in class in front of the students. They were the best of fights. It was intellectual sparring in the most respectful, and most uncompromising, of ways. The students loved it, and we loved it. Our work was better for it. He never let me away with any academic slight-of-hand, nor I he. He expected nothing less of me. Ken was never happier than when we were discussing the latest medico-legal case, or the intricacies of the Human Fertilisation and Embryology Act 1990, as amended -- “But what does it mean?!”, he would insist with an accusing stare as if you were personally responsible for the latest legislative dog’s breakfast!

Ken and I wrote a lot together . I was privileged to be included on to the authorship of Law and Medical Ethics in its fifth edition, first as a contributor of a few new chapters, and later as full co-author with Ken when Sandy McCall Smith moved on from academia. It was hard to lead a new authorial team with Shawn Harmon and Gerard Porter for the tenth edition in 2016 because this was the first time without Ken. Yet, Ken’s influence was still felt, and we were delighted that he contributed the Foreword, written with typical humility: “Best of luck to one and all! The surface to understanding may be changing, but we must hope that Law and Medical Ethics continues to ensure that its signposts are correct and are pursued.” This is the final challenge of Ken Mason to all scholars in his field.

In the rest of this contribution, I will suggest ways in which Ken and I would have pursued our collective contribution. In addition to Law and Medical Ethics, we wrote many articles and chapters together, the last of which was our joint contribution to the festschrift for Sheila McLean: Inspiring a Medico-LegalRevolution (Ashgate, 2015) . In a chapter entitled, Trust or Contract: How Far Does theContemporary Doctor-Patient Relationship Protect and Promote Autonomy? , we tackle the emerging concept of vulnerability as an aspect of autonomy protection and promotion in health and social care law. It stems from the Court of Appeal ruling in DL v A Local Authority [2012] EWCA Civ 253. This case intrigued us for many reasons:

1.      To us, it represented the latest step in the fetishisation of autonomy in medical law, but in new and as yet unexplored ways;
2.      It reaffirmed the enduring role of the inherent jurisdiction of the English High Court to protect vulnerable persons, raising potentially wide-ranging implications across the entire discipline of medical jurisprudence;
3.      It broke down barriers between medical law and other legal fields, including social care, immigration, and domestic & international human rights, as well as raising important implications for an ethic of care that can so often be absent from formal law itself;
4.      It suggested the emergence of a new path through medico-legal conceptualisations of autonomy and best interests to date, notably that the binary labels of capacity/incapacity were being recognised as of limited utility – something we had long argued - and that a Third Way might be necessary to support people in-between and that would help lead them through uncertainty and back to autonomy (where this has been questioned); and finally,
5.      It raised more questions than it answered, which was always a great source of some new fights!

In Re DL, a local authority raised questions about the treatment of an elderly couple being cared from by their 50-year-old son, including alleged threats and physical abuse, preventing the parents from leaving their home, and obstructing carers and health professionals. Legally, the parents had capacity as defined under the Mental Capacity 2005 Act. This meant that the Court of Protection had no jurisdiction. Nonetheless, the local authority sought an interim injunction from the High Court via its inherent jurisdiction despite the fact that it was thought to have been abolished by the 2005 Act.

The central legal issue for the CA was summed up by McFarlane LJ:

“The question for consideration is whether, despite the extensive territory now occupied by the MCA 2005, a jurisdictional hinterland exists outside its borders to deal with cases of ‘vulnerable adults’ who fall outside that Act and which are determined under the inherent jurisdiction.” 

In confirming the enduring nature of the jurisdiction, the Court of Appeal highlighted a number of important issues:

i. The inherent jurisdiction of the High Court extends to adults whose autonomy has been compromised by external factors, such as undue influence, and when this leaves them outside the protection of the MCA.

ii. The category of persons potentially caught by the jurisdiction is determinedly open-ended. As Munby J. said in Re: SA (Vulnerable adult with capacity:marriage) [2005] EWHC 2942 (Fam):

“… I would treat as a vulnerable adult someone who, whether or not mentally incapacitated, and whether or not suffering from any mental illness, is or may be unable to take care of him or herself against significant harm or exploitation or who is deaf, blind, or dumb, or who is substantially handicapped by illness, injury or congenital deformation. This…is not and is not intended to be a definition. It is descriptive not definitive.” This was entirely endorsed by the Court of Appeal.
 
iii. The jurisdiction is aimed at ‘…enhancing or liberating the autonomy of a vulnerable adult whose autonomy has been compromised by a reason other than mental incapacity…’.  Its application therefore covers a potentially wide range of circumstances, including medical, welfare, social care and marital cases. However, decisions are not to be taken on behalf of persons and in their best interests. It therefore raises crucial questions about the nature and scope of the court’s powers to intervene.

iv. The nature and scope of court powers are at the same time specific (as complementary to the MCA and the CoP) and wide-ranging (as stated above). Indeed, the Court of Appeal noted that the exercise of the jurisdiction should reflect a ‘facilitative, rather than dictatorial, approach’ towards ‘the re-establishment of the individual's autonomy of decision making in a manner which enhances, rather than breaches, their ECHR Article 8 rights.’ 

For us, this raised a series of issues that we would have explored much more fully and deeply if time had been on our side. I intend to do so, alone and with other colleagues committed to continuing the legacy of Ken Mason. For now, I offer the following tantalising intellectual tidbits that hopefully will inspire new fights and new contributions to the discipline of medical jurisprudence that Ken Mason loved and to which he contributed so much:

·         Who is vulnerable within this framework, and on what basis is it ethical and morally defensible?
·         What does it mean to enhance or liberate autonomy in ways that are not unacceptably paternalistic?
·         What are the limits of the jurisdiction, both legally and ethically?
·         What are the implications of the jurisdiction for medical jurisprudence generally?
·         What is the future of the jurisdiction?

As we approach the fifth anniversary of the Court of Appeal ruling in Re DL (March 2017), it has been mentioned or considered no fewer than 19 times in subsequent cases. And, while there has been important professionally oriented discussion, the academic reaction has largely been muted (with a few notable exceptions here  and here).

For Ken Mason, this would be a clarion call to action. His quest for new knowledge and deeper understanding was insatiable. His curiosity and enthusiasm were infectious. It was an honour to know him and to work with him. It will be a privilege to attempt to continue his intellectual legacy.   

Reflections on a motley coat

By Nayha Sethi, School of Law, University of Edinburgh

I still remember very clearly the first time that I met Ken. It was the introductory seminar of my LLM module in Medical Jurisprudence. Whilst having such a wide array of fascinating topics to discuss each week already felt like a treat, the real show-stopper for my fellow classmates and I was having an 89 year old Professor teach us. And not just any 89 year old Professor, but THE Ken Mason, ‘Ken the legend’ as he soon came to be known amongst us. I so looked forward to Wednesday morning seminars, to hearing what Ken had to say about all of the challenging topics that we covered (particularly on reproduction and assisted dying), to watching him debate with his colleagues (sometimes with a mischievous argumentative glint in his eye), to chatting with him over the coffee break, to which he insisted bringing for the class a variety of chocolate biscuits, tea and coffee and his beloved kettle, still going strong since the 1970s we guessed.

A few years on, we set up the Mason Institute in Ken’s honour. We named the Mason Institute blog ‘the Motley Coat’ after Ken’s inaugural lecture entitled ‘Ambitions for a Motely Coat’. I am sitting with a copy of the transcript of that lecture, delivered on 28th February 1974, open beside me as I write. Ken borrowed the title, taken from Shakespeare’s As You Like It, in which he starred as Jacques in a school production many years earlier. Ken reminded those attending his lecture that in the play, Jacques met a jester who impressed him, upon returning to his friends, Jacques proclaimed:

‘and in his brain,
which is as dry as the remainder biscuit after a voyage,
he has strange places crammed with observation,
the which he vents in mangled form

‘Oh!’, said Jacques, ‘oh! That I were a fool; I am ambitious for a motley coat.’

Ken concluded his lecture with the following words:

‘I have tried to show you some ways in which I would hope to justify my appointment by transforming the rather monochrome, unvarying cloth of traditional forensic medicine into what I believe to be a fresh, multicoloured and multi-directional motely coat of community service, resting on a broad base of service to the community in general and the police in particular, fed intellectually by contact with the students of many disciplines and extending arms which genuinely welcome and are anxious to provide a full service of co-operation’.

Given the numerous and vast contributions which Ken made throughout his academic career, it is safe to say that he was certainly successful in his endeavour of transforming forensic medicine into a fresh, multicoloured and multidirectional coat.

Ken was also very much successful in extending his arms out to students and colleagues alike. He was particularly generous with his students, whom he inspired, adored and indulged with endless patience and enthusiasm. I’d often leave his office with another book which he thought I might find interesting, or a new angle to explore in my work, and always with the feeling that my own thoughts and perspectives mattered too. He was constantly encouraging and very much open to genuine debate. He taught me that even after 97 years, it is perfectly acceptable to say ‘I don’t actually know the answer to that’ or ‘perhaps I have changed my mind’, and the importance of listening to others, always with respect.

I remember the first time that I visited Ken in his office, no longer as a student but as a colleague, the year following completion of my LLM. I knocked on his office door one lunchtime, and was greeted by Ken, sitting in his chair, with the cricket blaring on the radio in the background. He was
nibbling away at some of his favourite Jamaican ginger cake. Every so often he would like to have a little rant (ranging from deeply philosophical musings, right up to trivialities on the diminishing quality of Jamaican ginger cake). Often such rants were premised with ‘the only bee in my bonnet is...’.

It transpired that Ken had quite a few bees in his bonnet, all of which were a delight to hear about. His reflections and observations were so insightful and more often than not, injected with a good dose of Ken’s signature humour. Alongside his ability to laugh and to make others laugh, in all of our conversations, no matter what the topic, no matter how Ken was feeling, he approached his colleagues and students with openness, humility and kindness. What also struck me about these rants was that Ken would often end them with a question, he honestly wanted to know what others thought, he was just as interested in listening to and learning from others as he was in sharing his own opinions.

I was always so impressed with Ken’s eagerness and tireless efforts to keep abreast of the latest developments in medical jurisprudence, particularly when office visits turned into home visits. He was keen to discuss the latest case law or journal articles over a few glasses of Bombay Sapphire (indeed that’s when the discussions became even more interesting!)

Ken had so many bees in his bonnet because he genuinely cared, he genuinely wanted to make an impact, to continue in his service to the community. This was evidenced after his ‘official’ retirement, which really only meant that he ceased teaching and continued to write from home. Ken never ceased in transforming the motley coat. I look forward to working with colleagues within and beyond the Mason Institute, in continuing Ken’s legacy, inspired by his dedication to transformation, multidisciplinarity, dialogue, engagement with students, open arms and community service. Now what bee is in your bonnet?....

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.