Fifteen Eighty Four

What do we hope to become in a career or over multiple careers in a lifetime? What do we want to be known for? What mark do we aspire to make, however large or small? Who, if anyone, do we seek to inspire?

In this blog, the second in a series of five posts responding to contributions to the Law and Legacy in Medical Jurisprudence festschrift published by Cambridge University Press, I reflect on the above questions against the backdrop of the Liminal Spaces project for which I was Principal Investigator and which ran from 2014-2021.

The Liminal Spaces project was funded by Wellcome as a Senior Investigator Award to examine human health research and its regulation, exploring the gaps between law and health research in practice. The project employed eight colleagues in total, from anthropology, sociology, bioethics and law, and three PhDs were funded and completed. The project was anchored by two key features: (i) a deep exploration of the metaphor of the ‘regulatory space’ as applied to human health research, and (ii) the anthropological concept of liminality, itself describing a ‘space’ occupied by humans in times of transition and change as they shift status; for example, from child to adult, from healthy person to patient, from citizen to research participant, or from living to dead. Liminality perfectly accounts for the act of becoming. It captures moments of uncertainty and fluidity during such processes, where risks are heightened but also where opportunities can emerge. We conceived of the regulatory space as a liminal space, and the team sought to explore multiple facets of what this framing would reveal about the regulation of human health research.

The research findings from the project can be found on its legacy website. However, what interests me for present purposes are two distinct ways in which the project represents a legacy far beyond its own research objectives. These are (i) with respect to the people involved, and (ii) with respect to the intellectual ideas that we generated together, and which have since borne new fruit. I use the work of three members of the Liminal Spaces team to illustrate this, as represented by their respective chapters in the Law and Legacy in Medical Jurisprudencefestschrift that is the basis for this series of blogs.

Agomoni Ganguli-Mitra and Catriona McMillan both joined the Liminal Spaces project as junior researchers who have since transitioned to become full-time members of Edinburgh School and the Mason Institute, in bioethics and medical law respectively. It was a real honour to steward them through the various stages of their careers while working on the Liminal Spaces project. They contributed a joint chapter entitled Taking the Legacy Forward: Reflections on Graeme Laurie’s Approach to Liminality and Its Relevance for the Ethics and Governance of Reproductive Technologies. Using the liminal lens developed in our project, Ganguli-Mitra shines light on the practice of international surrogacy, where despite a plethora of laws – national and international – many actors are still left vulnerable, exposed, and at risk. Attempts to create legally regulated spaces have, in turn, driven actors either towards or away from certain legal systems and towards others, invariably where legal protections are less certain or even non-existent.

This reminded me that one of the original pieces of legislation in the world to seek to regulate surrogacy – the UK’s Surrogacy Arrangements Act 1985, as amended 1990 originally stated: “No surrogacy arrangement is enforceable by or against any of the persons making it.” Unenforceable and unacceptable, in my humble opinion. Such a law washes its hands of the surrogate and the parents-in-waiting with such a provision. I say this not because I am particularly in favour of a contractual approach to surrogacy but because it represents a failure to deal with the realities of the multi-dimensional negotiations, accommodations, and arrangements that people go through. The law in the UK remains the same today.

In responding to such legal failings, Ganguli-Mitra’s analysis using liminality shows how various kinds of ‘liminal identity’ are created through surrogacy practices, for example ‘couple as prospective parents’, ‘surrogate as both mother and provider of a service’, ‘physician as innovator’ etc. What is lacking, however – and arguably what law alone cannot provide – is a mean to guide and support these actors in the act of becoming something new. Ganguli-Mitra advocates both for rigorous ethical debate on the nature, justification and moral standing of surrogacy, and for the need to listen to the voices and interests of the liminal identities created by surrogacy, lest they be stuck in a state of permanent liminality – neither one being nor another – and subject to further risk of legal abandonment and social exploitation as a result.

Catriona McMillan offers a similar exercise with respect to ectogenesis, viz, using liminality to examine an area of reproductive technologies, this time regarding the law and ethics of artificial womb technology to produce an embryo ex utero. McMillan had previously examined the status of the human embryo involved in IVF in her monograph with Cambridge University Press, arguing that the in vitro embryo – which could be created both for reproductive and/or research purposes – is quintessentially a liminal entity.

In the current chapter, McMillan extends this analysis to argue that the ectogenic fetus will be an entirely novel liminal entity, with attendant challenges regarding its ethical and legal status. For example, a key feature of liminality is the need for a representative of order to lead persons through and out of liminality into their new status. But who performs this role for the ectogenic fetus and who determines when it will happen? These are crucial questions for matters of personhood, parenthood, legal status, inheritance etc. Liminality is also inherently concerned with thresholds, but if we remove ‘birth’ as the legally significant threshold, then which threshold should take its place? Current laws do not answer these questions. Future laws cannot answer them in isolation from robust ethical and social debate. Liminality cannot provide answers either, but as McMillan’s novel analysis shows – it can lead us to better understand about what is at stake and can assist us to begin to settle on the right sets of questions to ask.

As the final example in this blog, I highlight the work and contribution of Annie Sorbie in her chapter entitled The Public Interest in Health Research: From Concept to Context. For Annie, the act of becoming an academic began with a phone call between her, me and our colleague in the Mason Institute, Gill Haddow. This was, in effect, an interview for one of the doctoral scholarships on the Liminal Spaces project. This represented a crucial liminal moment for Annie because it initiated the change from legal practitioner back to a being a student. I am delighted to say that she recently secured her PhD while holding down a job as a full-time academic in Edinburgh Law School. Her transition is complete!

In a delightful tribute, Annie notes in her chapter that she had never met me before joining our team and she reminded me that this was also my own experience of J K Mason when I first joined Edinburgh in 1995 and as I recounted in my contribution to his own festschrift.

Sorbie’s work concentrates on the role of appeals to public interest in human health research, usually in contradistinction to other legal and ethical mechanisms used to legitimate health research, such as consent and/or anonymisation of data and tissue. Her chapter represents something of a tour de force of engagement with my own work over the years and the various ways in which I have sought both to conceptualise public interest more robustly and to operationalise it in a policy setting. Annie and I share a frustration about the impoverished nature of discussion within the judiciary about the nature and role of public interest. We are convinced of the need to look beyond the courts and legal scholarship for deeper understandings. By the same token, concepts such as social value from bioethics and social licence from the social sciences, while doing much the same work as public interest in law, are also bounded by their disciplinary origins. Arguably, the concepts need to become something more that transcends disciplinary silos. Annie’s PhD thesis deals precisely with these issues – so watch this space!  

Transcending disciplinary silos was a common theme of the Liminal Spaces project, especially important when engaging with actors who are directly involved in the doing of human health research. To this end, Sorbie gives an account of our Delphi policy exercise which sought views from such stakeholders and on which the role of public interest was a central question. More than 73% of participants believed that values such as public interest need further elaboration in practice based on their own experiences. To deliver this is a core commitment from a scholar like Annie Sorbie, working to co-produce solutions with stakeholders such as these as well as with publics involved in, and affected by, human health research. To paraphrase the final sentence of her chapter: Legacy can be understood not only as something that connects us to what has gone before and enables us to move forward with the benefit of that wisdom, but it is also a means of community building and facilitating future progress and innovation. My sincere thanks go to all members of the Liminal Spaces team who made up an excellent community of scholars during our project together. The legacy of our ideas lives on. For me, I hope that a part of my own legacy is forever connected to these colleagues. I am so proud of what you have all become.