Book review: Leading Works in Health Law and Ethics

Introduction

Like many or perhaps all areas of research, the field of health law and ethics has significantly evolved since its conception. Indeed, the field has been greatly improved by thousands of brilliant scholars and their insightful works on key issues. While some issues are long-standing, others have more recently emerged in light of scientific and technological progress. This collection explores some of these works’ significance and legacy. Edited by Sara Fovargue (Professor of Law, University of Sheffield) and Craig Purshouse (Senior Lecturer, University of Liverpool), the collection is part of the broader ‘Analysing Leading Works in Law’ series edited by Russell Sandberg (Professor of Law, Cardiff University). ¹ Focussing on various sub-disciplines, each series aims to re-examine and assess the past and future developments in the topics. In Leading Works in Health Law and Ethics, each chapter is devoted to a specific text which contributors self-selected. As such, Fovargue and Purshouse highlighted that they were ‘not attempting [] to provide or replicate a health law and ethics canon’. ² This intention was made clear and further reiterated by contributors throughout the collection.

Summary of chapters

The 16 substantive chapters touch on various issues from medical decision-making and reproductive autonomy. Each chapter is unique and personal as contributors self-selected the works, but they helpfully follow a unified structure which creates a through line that connects the whole book. First, the text is discussed in detail before including its surrounding contexts such as legal issues or key cases that have influenced or led to the work. The contributors then discussed the significance and lasting legacies of each journal article, book, or report. I will briefly recount each chapter while grouping them in various areas of health law.

Public health and governance over biological materials

Anne-Maree Farrell’s chapter on The Gift Relationship by Richard Titmuss (Chapter 2) highlighted the lasting legacy of the work as ‘its reach and influence extending beyond academic and disciplinary boundaries and into policy and regulatory domains’. ³ Although Titmuss encouraged altruism and gifting in human tissue donation, Farrell also highlighted how ‘the reliance placed on the ethical commitment to the gift relationship as a guarantor of blood safety led to a degree of complacency on the part of those in charge of national blood services’ ⁴ which increased the number of Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (“HIV/AIDS”) infections. Craig Purshouse also deals with the HIV/AIDS pandemic as he discusses Margaret Brazier and John Harris’s ‘Public Health and Private Lives’ ⁵ in Chapter 9. The article was written in regard to the HIV/AIDS pandemic but is especially relevant today in light of the COVID-19 pandemic. Brazier and Harris ‘examined the law and ethics of infectious disease and asked how far society should “recognise and enforce an obligation not to expose others to infection”’ ⁶ and whether individuals who intentionally transmit these may be criminalised. In answering this, Brazier and Harris emphasised on consent: it was ‘not the transmission of disease per se but the violation of the other person’s right to control over his/her own body and health’. ⁷

In Chapter 13, Roy Gilbar highlighted why and how Graeme Laurie’s Genetic Privacy could be considered a leading work. ⁸ Laurie argued that privacy should be the leading principle in disclosure of genetic disorders. However, Gilbar also aptly noted that ‘Laurie’s account of privacy of genetic information is based on liberal-individualistic philosophy’ ⁹ which, consequently, does not leave much room to consider the patient and the relatives as a community. Legal scholar Bonnie Venter also considered the issue of rights over human biological materials, as she discussed the significance of The Ethics of Transplants ¹⁰ by British philosopher Janet Radcliffe-Richards (Chapter 15). Radcliffe-Richards was mostly known for her work in feminism, bioethics, and practical ethics but started exploring the issue of organ transplantations after exposing the 1980s kidney buying scandal. Her book aimed to ‘shift the way matters of transplantation are discussed and thought about’, ¹¹ especially with regard to the objection to paid organ donations. Radcliffe-Richards argued for better moral reasoning and justifications behind the prohibitions. Venter aptly highlighted that, although arguments within the field have evolved, Radcliffe-Richards’s work still plays a central role in such conversations.

Medical principles and methodologies

In Chapter 3, Stephen W Smith explored ‘a classic in the field of medical ethics’ ¹² : Beauchamp and Childress’s Principles of Biomedical Ethics (PBE) where the four principles of autonomy, beneficence, non-maleficence, and justice were uttered. ¹³ To Smith, the work ‘provide[d] a bioethical language to understand decisions’ ¹⁴ and became an ‘aggregator of current thought within the field [of bioethics]’. ¹⁵ Smith argued that PBE ‘has pushed bioethics towards being a discipline where the clinical and the theoretical are both seen as important goals’. ¹⁶ Another foundational work included in this collection is Feminist Perspectives on Health Care Law by Sally Sheldon and Michael Thomson (eds) discussed by Sara Fovargue (Chapter 11). ¹⁷ Feminist Perspectives is a collection of works which played a role in integrating feminist perspectives to the medico-legal curricula. The book sought to highlight healthcare law’s status as a discrete subject and the relevance of feminism to health law. Fovargue argued that, before this, ‘legal stories were automatically (unthinkingly?) written and heard from the perspective of white, able-bodied, “autonomous” males. That law could hear from or talk to other bodies was not widely accepted’. ¹⁸ Feminist Perspectives ‘gave credibility (if it was needed) to feminist legal thinking and methodologies, credibility which has since been enhanced’. ¹⁹ Finally, in Chapter 16, Louise Austin discussed a relatively recent article by Jonathan Ives which argued for a new empirical ethics research method called ‘reflective balancing’, which involves taking empirical data when developing and testing normative theories. The aim was for Ives to ‘find a way to cohere normative theories with empirical data which addressed the difficulty of determining the nature of coherence being sought’. ²⁰

Mental health law

In Chapter 4, Judy Laing discussed Larry Gostin’s ‘The Ideology of Entitlement: The Application of Contemporary Legal Approaches to Psychiatry’, ²¹ where Gostin argued for a rights-based ideology for mental health law which, at the time, was ‘a pendulum swinging between legalism and medicalism’. ²² Gostin’s work helped destigmatise mental illness and remains highly relevant today. A similar piece included in this collection is Mary Donnelly’s Healthcare Decision-Making and the Law ²³ as discussed by Jaime Lindsey in Chapter 14. Lindsey highlighted how Donnelly’s work significantly impacted the field of mental capacity law through her rigorous analysis of autonomy’s role in healthcare decision-making. At that time, ‘healthcare professionals had too much scope to make decisions about patients rather than with them’. ²⁴ Donnelly was one of the first scholars to analyse the legal landscape post-Mental Capacity Act 2005 and accurately predicted that the Act would not be relied on much by professionals as ‘those operating in mental capacity law still relying on judicial interpretation and differential factual scenarios’. ²⁵

Definition and scope of medical decision-making

Richard Huxtable explored Peter Skegg’s Law, Ethics, and Medicine, ²⁶ specifically on the question of allowing to die and terminating ventilation (Chapter 5). ²⁷ As Huxtable states, Skegg accurately predicted the law’s development and challenges, including the court’s involvement and desire to exonerate clinicians as well as the Bolam test. ²⁸ In Chapter 7, José Miola offered his perspectives on Ian Kennedy’s work ‘What Is a Medical Decision?’, ²⁹ which explored the tensions between lawyers and doctors at a time when doctors’ competences were ‘conceptualised too broadly’ and when they had ‘decision-making authority over questions that were not medical, but moral, philosophical’. ³⁰ Summarising Kennedy’s ‘confrontational piece’, ³¹ Miola stated how Kennedy’s work highlighted that ‘[j]ust because a decision is made by doctors, does not mean that the decision is (necessarily) a medical decision’. ³²

Health law scholar Mary Donnelly and practitioner Barry Lyons offered their perspectives on David Rothman’s Strangers at the Bedside, ³³ which sought to connect the perceptions of insiders (doctors) and outsiders (lawyers and ethicists; Chapter 8). ³⁴ As Rothman himself stated, his goal was ‘[t]o make certain that the patient’s voice would be heard and respected demanded the support of a chorus, and as sometimes happens, the chorus can overwhelm the soloist’. ³⁵ Donnelly and Lyons highlighted that Strangers is ‘an origin story of the incursion of lawyers and bioethicists into the world of medicine’ ³⁶ which, in turn, allowed for broader conversations on scope of medical decision-making. Sarah Devaney (Chapter 17) has also highlighted how to learn from mistakes in Errors, Medicine, and the Law by Alan Merry and Alexander McCall Smith (first edition) as well as Alan Merry and Warren Brookbanks (second edition). ³⁷ The book is centred on the belief that most things that go wrong in healthcare are the consequence of errors made by ‘healthcare professionals [who] had likely tried to do the right thing’. ³⁸ Thus, they argued that ‘different causes of patient harm should give rise to different regulatory and legal responses, so that lessons can be learned and safety improved’, ³⁹ which would consequently improve medical decision-making.

Reproductive health

In Chapter 6, Emma Cave highlighted the importance and legacy of the Warnock Report, ⁴⁰ the content of which ‘has served us so well for nearly 40 years’. ⁴¹ Cave provided valuable insight into the Warnock Committee and how this impacted the production of the Report: the Committee had a ‘balanced composition’ and was led by the ‘pragmatic, deliberative, and transparent approach’. ⁴² It was also gender-balanced, which was particularly important given the topic of reproductive health and revolutionary for its time. Cave highlighted how one of the strongest aspects of the Report was its lack of unanimity, which the Committee addressed: ‘in [reaching unanimity] we failed, and rightly so. If our Committee has been undivided it would inevitably also have been unrepresentative, perhaps seen as biased’. ⁴³ As expected, the Report ‘fuelled rather than stilled the controversy’ ⁴⁴ but this gave rise to important conversations and debates.

In Chapter 10, ⁴⁵ Emily Jackson explored Sarah Franklin’s Embodied Progress: A Cultural Account of Assisted Conception ⁴⁶ which was published nearly two decades after the Warnock Report. As an anthropologist and ethnographer, Franklin explored individuals’ experiences with in vitro fertilisation (IVF) processes. As Jackson highlighted, this work humanised a piece of technology and shifted understandings and perceptions on IVF. This was particularly valuable as ‘[s]cientists know what happens in the Petri dish . . . but they cannot know what it is like to undergo the other aspects of the IVF process’. ⁴⁷ Franklin showcased the progress of IVF technology while ‘simultaneously reveal[ed] how much we don’t know about human reproduction’. ⁴⁸ Embodied Progress, along with Jackson’s excellent discussion of it, reminds us of the very practical and human aspects of health law, technology, and ethics. Finally, Jo Bridgeman discussed Regulating Reproduction by Emily Jackson ⁴⁹ in Chapter 12. ⁵⁰ Jackson argued that reproductive autonomy should be the main guiding principle in regulating reproduction. In addition to providing a ‘rich multidisciplinary and contextual examination of the regulation of reproduction’, ⁵¹ Jackson argued against the masculine and individualistic understandings of autonomy prevalent at that time. Regulating Reproduction was heavily influenced by feminist liberal theories, such as Jen Nedelsky’s relational theory, but it is not an explicitly feminist text. Ultimately, as Bridgeman highlighted, Jackson argued that ‘positive liberty was required . . . [and laws must] enhance the capacity of the individual to exercise reproductive autonomy and there is public provision . . . that enhance reproductive autonomy’. ⁵² The book concluded with Bernadette Richards’s reflections on the leading works and their analyses, ⁵³ who highlighted that the collection encourages readers to also think about the works that have shaped them, and their journey into this discipline.

Analysis

Bernadette Richards aptly stated that ‘[a]ll of the works presented here invite the reader to consider something through a new lens [and] to view things in a different way’. ⁵⁴ Each chapter shines an important light on how far the field of health and bioethics has progressed, while simultaneously highlighting the unchartered territories we have to explore. The collection is written in plain and accessible language that is easy to understand, which is impressive given the complex and theoretical nature of the field. This makes it an invaluable resource for scholars and practitioners on varying levels, as well as any person interested in the topic. In addition, special appreciation and acknowledgement must be awarded to the editors, Fovargue and Purshouse, who have very clearly and thoughtfully put together this book. They have successfully recruited a highly esteemed group of scholars and thinkers to provide their perspectives. Some of these contributors’ works have been included in the collection (e.g. Mary Donnelly and Emily Jackson) and I am certain that others have also been regarded as ‘leading works’ by other scholars and collections.

I found that one of the strongest aspects of the collection is how it – intentionally or unintentionally – highlighted the interdisciplinary, relational, and dialogic nature of health law and ethics. The chapters highlighted how each work was influenced by conversations and critique in their creation and/or improvement. As Stephen W Smith showed, Beauchamp and Childress’s PBE was significantly improved in latter editions as criticism and feedback from fellow scholars helped them hone the principles. The Warnock Report, as highlighted by Emma Cave, remained as relevant and robust even after 40 years on as they championed collaboration, dissent, and the diversity of opinions. In addition, almost all contributors have personal connections with the works they have chosen to discuss. Emily Jackson highlighted the impact of Franklin’s Embodied Progress on her perception of IVF and how it was ‘a crucial part of [her] education’. ⁵⁵ Jaime Lindsey stated that ‘finding [Donnelly’s book] a few years after it had been published, and at the start of [her] own doctoral journey in mental capacity law, was a major factor in the trajectory of [her] own research’ ⁵⁶ as she later empirically tested Donnelly’s research questions. Purshouse also highlighted how he considers Brazier and Harris’s work as ‘leading’ due to their elegant writing style and its influence in destigmatising HIV/AIDS for him. ⁵⁷ Such examples remind us that we, as readers, bring our own identities and positionalities into each book, article, report, and text that we approach as well as the research and works we undertake and create. ⁵⁸

Despite its many strengths, however, this collection could have benefitted from a more critical inquiry into the leading works and the authors. Although some critical perspectives were already presented (e.g. Fovargue’s in-depth discussion of feminism and brief mention of anti-colonialism in bioethics), viewing more of these works through a critical legal lens would have added relevance and importance to the collection. The connection between chapters could have also been made clearer by, for example, grouping chapters together based on their topic in addition to arranging them in a chronological manner. I have adopted this structure when discussing the chapters (see above) in hopes of highlighting the value it may add, particularly in allowing the reader to gain deeper insights into how certain themes have developed, for example emphasising the clear line from the Warnock Report to Franklin’s anthropological account of IVF, and to Jackson’s call for the recognition of reproductive autonomy. In addition, the collection would have been stronger if it had included contributors from a more diverse range of racial and ethnic backgrounds. This may not have been a problem in and of itself but, in self-selecting and discussing the works, each contributor is influenced by their own lived experiences and positionality. This lack of diversity has resulted in a relatively homogeneous selection of ‘leading works’ that are written by white scholars through a, predominantly, Eurocentric lens. I understand that this might be challenging as the landscape of academia in the United Kingdom and beyond itself continues to lack in diversity. I would be interested to see if a second edition, in several years’ time, might change as critical legal and health ethics become more frequently researched. ⁵⁹

Conclusion

Leading Works in Health Law and Ethics is a well-written and insightful collection that offers valuable perspectives on important texts within the field. While some of these texts were more familiar than others, delving into each chapter has been an enlightening experience as I learn about the significance and enduring impact of these works in the field of health law and ethics, the connections between the work and the authors, and the personal impacts they have had on the contributors.

Reflecting on the works and contributions, Richards stated that this collection is testament to the existence, richness, and diversity of health and medical law, and I could not agree more. I wholeheartedly believe that this collection should – and will, in time – be offered as additional readings in university courses, due to the insight and value they might add. Leading Works is a great example on how we should connect with and reflect on the works we encounter in our research and academic pursuits. Among other things, the collection reminds us that there is scope for critiquing how leading works may – notwithstanding their prominence and status – exclude certain voices, perspectives, and persons. I hope that we hold onto and implement this lesson, in health law or beyond.