Fifteen Eighty Four

This blog is the third in a series of five posts that reflect on contributions made to the festschrift Law and Legacy in Medical Jurisprudence: Essays in Honour of Graeme Laurie, published by Cambridge University Press. In the previous blogs, I have looked back on the crucially important role of teaching in our field, and on some of the ways in which research as part of the Liminal Spaces project can be said to shape scholarly legacy building. In this blog, I focus on what I consider to be perhaps my best claim to leaving an intellectual legacy in the field of medical jurisprudence, being my work on privacy which has spanned my entire academic career. For me, part of the enduring appeal of privacy is summed up in this unattributed quote: “Privacy, like an elephant, is much more easily recognised than described.” 

In the festschrift, there is one chapter in particular that engages deeply with my scholarship on privacy. This is the contribution by my dear friends Mark Taylor and David Townend – themselves life-long obsessives about the meanings, roles, value, contested worth, plasticity, utility and futility of privacy – all of which is unpacked in their excellent contribution entitled Towards a New Privacy: Informed Consent as an Encumbrance to Group Interests. And, just as they did me the honour of engaging with my privacy work in that chapter, so too I want to honour them in return by engaging with their ideas through this modest blog. 

Before turning to the thoughts of Taylor and Townend, however, I must first lay out my own stall when it comes to the concept of privacy. As an undergraduate, I replaced one of my seven honours papers with a dissertation that I chose to write on the then relatively new Data Protection Act 1984. This was a dull piece of work (!) but it sparked a deeper question for me: what is the core value that data protection is trying to protect? Of course, there is no one answer to this question, but no one can deny that a major part of any answer is the value of privacy. But what is privacy? Why is it valuable? How does it operate in diverse societies and cultures? How does it sit alongside other values that favour community or collective interests and rights compared to an idea that seems to be intrinsically individualistic, perhaps even selfish? These questions intrigue me as much today as they did over 30 years ago. An investigation of privacy formed the basis of my doctoral work, which became my 2002 monograph Genetic Privacy: A Challenge to Medico-legal Norms. 

It might seem surprising to a younger, contemporary reader but trying to research privacy from within the UK jurisdictions in the late 1980s and early 1990s was a thankless task. Precious little literature existed that engaged on the core meanings of the concept. There was little scholarly discussion of legal protection of the central interests at stake, such as concerns over access to personal information. These interests and ancillary others, such invasions of bodily integrity, were subsumed under other legal paradigms. With few exceptions, privacy per se was under-theorised in British legal scholarship. 

The same was not true across a vast array of other disciplines. Moreover, one only had to look to the United States for extensive legal literature on the Right to Privacy, especially as interpreted out of the Constitution by the US Supreme Court and as part of the ‘penumbra of rights’ in the Bill of Rights. This happened first in the case of Griswold v Connecticut (1965) and then, even more famously, in Roe v Wade (1973), now made infamous by the egregious overruling of this decision by the current US Supreme Court in Dobbs v Jackson Women’s Health Organization  in 2022. 

The Dobbs decision is an appalling attack on women’s rights for myriad reasons but space does not permit me to explore this crucially important issue in this blog. To concentrate on privacy, however, it is a devasting initial assault on constitutional rights precisely because Roe v Wade was framed as a privacy issue. The case concerned the rights of women across the United States to access abortion services and it prohibited and limited individual state interventions within strict time parameters; in doing so, a sphere of private decision-making – free of state interference – was carved out. This built on Griswold which constructed a sphere of private action in the marital home where couples were free to use contraception beyond the reach of the state. Following these two cases, this same conceptualisation of privacy then grounded a plethora of other privacy rights, including access to contraception for young persons, the protection of same sex relations, and the lawfulness of same sex marriage. By these means, a sphere of privacy was created through this series of precedents; they are inherently connected – theoretically, conceptually and constitutionally. The right-wing assault on Roe v Wade is just the beginning of an assault on privacy itself. 

The idea of privacy as a (safe) space has always intrigued me. My own conceptualisation of privacy is a state of separateness from others, both in a physical sense and in a psychological sense. This last notion is important, I believe, because privacy is crucial to our holistic well-being. If we are not able voluntarily to absent ourselves from others on occasion, then our very identity and integrity are at risk. But as I learned from the scholarship of Ruth Gavison in her outstanding piece Privacy and the Limits of Law in Yale Law Review from 1980 – privacy is not and cannot be about control itself. For if we reduce privacy to control, it follows that any loss of control is a loss of privacy and this is simply not true. The very existence of data protection laws illustrates this – data subjects do not have on-going control over what happens to their data, but it does not mean that their privacy is automatically or necessarily compromised. 

Discussions about privacy are full of paradoxes and confusion. Why are people so concerned about privacy when they willingly go on social media and over-share? Why are the rights to be free to use contraceptives and to access an abortion not matters of liberty or autonomy, rather than privacy? And what does it mean to have privacy anyway? 

If I am stranded on a desert island, am I in a state of privacy? This seems entirely counter-intuitive. And if I am given reams of medical information and told to choose my own best treatment option, is this an optimal demonstration of respect for my private decisions? Is this how best to pursue informed consent without undue coercion? Well, I would argue that on the desert island we are in isolation, not privacy; and as for the ‘informed’ medical decision, here we are being abandoned not respected. 

Privacy, for me, is a state of separateness from others that we are able to choose. This, however, is not the same as autonomy which is a right to self-determination with the normative claim that such a right ought to be respected. Seeing privacy as a state of separateness from others allows us, at least initially, to discuss privacy free of normative assumptions or claims (and any associated baggage). 

This brings me to the chapter by Taylor and Townend. They too have concerns about assuming normative claims before the case for privacy has been made. In particular, they challenge the individualistic concept of privacy tied to the idea of autonomy as expressed through informed consent, and see this as “…a secure foundation only for failure.” Taylor and Townend rail against attempts to conflate privacy with other notions such as autonomy and liberty, and instead they advocate for full engagement with privacy as an inherently contestable concept. Thus, unlike much of the literature that has tried to ‘pin down’ privacy as part of an ontological or categorisation exercise, Taylor and Townend embrace the fluidity and plasticity of notions of privacy. Their central proposition is to argue “…for a space to discuss it”. 

All three of us agree on the need not to impose normative assumptions on this kind of space. Taylor and Townend put it beautifully thus: “maximally shorn of normative commitment, [privacy as separateness] invites and allows debate regarding which states of separateness ought to be protected and respected.” 

After denouncing the “crippling priority of autonomy” as it is so often manifested in law and governance in the medico-legal field as an absolutist and inherently individualistic notion, Taylor and Townend seek to offer “a more useful concept of privacy [that] can locate individual self-determination in a moral community”. Using the example of group privacy, i.e. the idea that cohorts of individuals can suffer the same or similar privacy harms if they or their information are mistreated in some way, the authors posit that our discussions about privacy need to recognise that privacy can also be a collective concern. Rather elegantly, this also reflects an inherent trait of privacy itself, viz, it is never constructed in absolutist terms. Neither in ethics nor law do we find credible arguments in defence of an absolute right to privacy. Privacy rights and interests are always in play with wider societal and public interests. Sometimes the former trump, and sometimes the latter win out. Law, however, has a tendency to ossify the rules of engagement surrounding these matters; Taylor and Townend advocate that we tentatively challenge those rules and established precedents, since privacy, like any moral community, is in a constant state of flux. 

As to legacy, Taylor and Townend very kindly suggest that my conceptualisation of privacy as a state also sets up circumstances for a “legacy of facilitation” with respect not only to which privacy claims might be regarded as legitimate but also concerning which group rights and responsibilities must also be taken into account when we stake any claim to value privacy. 

One might think that after all of these years there is nothing much more to say about privacy, but quite the opposite is true. Privacy has become more of a political football than at any other time in its history. Linguistics gymnastics aside as to its meaning, it has come to represent the struggle for recognition and protection within a community of others. If we do not recognise the moral nature of that community, and the place of privacy in it, we not only ignore the elephant in the room, but we sow the seeds of our own collective and individual demise.