Interview with Farrah Raza about Her Project on Organ Donation and Transplantation

Farrah Raza leads the Minerva Research Group entitled The Ethics of Exchange: The Regulation of Organ Donation and Transplantation in the Department ‘Law & Anthropology’ of the Max Planck Institute for Social Anthropology since September 2020. She is also a Stipendiary Lecturer in Public Law at Pembroke College, University of Oxford. The Max Planck Society’s Minerva Fast Track Programme supports outstanding early-career female researchers by providing them with long-term career prospects in leadership positions.

Farrah, what legal and ethical aspects of organ donation are of particular interest for your research group?
The project consists of two key workstreams. The first workstream focusses on relevant ethics committees and decision-making processes in Organ Donation and Transplantation. This work stream will assess how the regulatory bodies and actors make decisions in the field of organ donation and transplantation. The aim is to assess the current legal frameworks and identify how ethical questions are addressed within those frameworks.   

And what is the second workstream about?
The second workstream is entitled Religion, Culture and Minority Rights in Organ Donation and Transplantation and will seek to understand “pluralism in action”, so to speak. In other words, the second workstream focusses on how patients and their families make life-changing decisions, in addition to how religious and cultural diversity is accommodated. Both workstreams are important in assessing the multi-layers of decision-making and the notion of an “ethics of exchange”, which refers to the norms that govern the relationships within that context. The combination of these two workstreams will hopefully provide us with a rich data set. We expect the scope of the workstreams to develop as the research progresses.

Your project investigates how the boundaries of law are shaped in the context of organ donation. What exactly does that mean and what normative and empirical contributions do you hope to produce?
We will conduct both field research as well as doctrinal legal research with the aim of shedding light on the complex and ever-changing field of organ donation and transplantation. This will be done by analysing the current legal frameworks in addition to “how the law is practised” in everyday life in clinics. Both methodological approaches have their strengths and limitations. The observation of every day practices is really important to grounding one’s research, but the theoretical debates about the multiple meanings attributed to the human body; the role of religious reasons in decision-making; or notions of consent are also of significance. We hope that the contributions of the project will include a range of research outputs. For example, I previously organised a conference entitled “Faith, Ethics and Organ Donation” which was open to the public at the Woolf Institute in Cambridge in February 2019.

You also plan to conduct comparative law research on the regulations in Germany and the UK. What is the current main difference between the two countries?
One of the main differences is the recent adoption of ‘deemed consent’ in organ donation in England which was introduced by the Organ Donation (Deemed Consent) Act 2019. Wales already shifted to implementing the ‘deemed consent’ system, and the legislation enabling that has been in force since 2015. There have also been debates in Germany about changing the current regulation of organ donation. Whilst there are obvious arguments for and against both what are known as ‘opt-in’ and ‘opt-out’ systems, we intend to investigate specific categories of cases within the respective systems. Another key difference is the sources of law and the differences between the English common law system as compared to the German legal system.  So, the research group will take a closer and comparative look in terms of specific legal concepts in the medical context.

You were at our institute for the first time five years ago and have maintained contacts ever since. As a legal scholar, what appeals to you about the way social anthropologists think?
I was fortunate to be accepted as a Visiting Guest Fellow in 2015-2016. Since then, I have continued to be drawn to the ways in which social anthropologists study the practices of individuals, groups and societies in their social context. The focus on ethnography as a methodology is appealing as it provided me with the opportunity to think about my own research from a fresh perspective. Moreover, the Department ‘Law & Anthropology’ at the Institute has particular expertise in religious diversity – which is one of my key research interests. In particular, as my PhD was on religious accommodation, I gained a deeper understanding of the ways in which different practices can translate into legal claims. I was also a Research Associate at the Institute in 2018 when I conducted a study on the former UK Donation Ethics Committee.

Does your project include field research?
Yes, the design of the research project includes a field research phase in the UK and Germany. Inge Fielder, who has a strong background in religious studies, will be joining the group as a PhD student, and will focus field sites in Germany. Likewise, I will conduct fieldwork at relevant sites in the UK.

How does your project build on your previous research?
My research interests, which include British Public Law, Law and Religion and Human Rights Law, feed into my current project. As teaching should be underpinned by up-to-date research, my research also feeds into my teaching and allows me to think about public law principles from different angles.

What are your next steps in the project?
The next steps are to finalise recruitment and organise fieldwork in both the UK and Germany. The organisation of the fieldwork requires us to consider the ethical issues raised by the research itself, and these issues need to be thought out and go through a process of review.  Due to the pandemic, there are additional factors that we must also consider given the current restrictions. We have been able to conduct an initial scoping exercise and engage with relevant actors, but we look forward to gaining further access in due course.