Monday, January 26, 2015

Biologically Modified Justice (now forthcoming...)

For the past 15 years I have been working on my book titled Biologically Modified Justice, which is an examination of some of the ethical and social implications of the genetic revolution.

I was thrilled to learn this week that Cambridge University Press has agreed to publish this book. This project has been a true (and lengthy!) labour of love. Now that I am in the final stretch of completing it I thought I would share some reflections on the challenges and joys of writing an interdisciplinary book over so many years.

The book develops a series of ideas, insights and arguments I have published over the past 13 years in diverse journals ranging from Bioethics and the British Medical Journal, to Biogerontology, Social Philosophy and Policy, Hypatia and the Annals of the New York Academy of Sciences. In addition to the external referees who evaluated the complete manuscript for CUP, various chapters of the book started as journal articles and thus were examined by (this is a rough total estimate) some 40-50 referees in philosophy, political science, medicine, geriatrics, genetics, biogerontology and evolutionary biology.

Receiving feedback from such a diverse range of experts proved to both enormously helpful as well as extremely daunting and challenging. By subjecting my work to review by scholars in different disciplines I have forced myself to transcend some of the limiting assumptions and myopic theoretical frameworks that arise from the inward disciplinary specialization typical of any one discipline (especially political philosophy). I did not want to write a book on the genetic revolution that would only appeal to, let alone be comprehended by, political philosophers (many of whom tend not to see the relevance or importance of the genetic revolution, or the biomedical sciences more generally). I wanted to write a book that would stimulate discussion and debate between scholars in many different disciplines so that we increase the probability that we will implement sensible and fair policies concerning the goal of directly modulating our biology via new genetic interventions.

The book brings together ideas I have published in these venues:

Empirical Ethics and the Duty to Extend the Biological Warranty Period
“Normative Theorizing about Genetics”
“Patriarchy and Historical Materialism”
Equality and the Duty to Retard Human Aging” .
Why Aging Research?”
Framing the Inborn Aging Process and Longevity Science” .
Preimplantation Genetic Diagnosis, Reproductive Freedom, and Deliberative Democracy
Towards a More Inclusive Vision of the Medical Sciences
Aging Research, Priorities and Aggregation
Genetic Justice Must Track Genetic Complexity
Has the Time Come to Take on Time Itself?”
Gene Patents and Justice
The Genetic Difference Principle
Genes and Social Justice: A Rawslian Reply to Moore"

A number of specific events proved to be important catalysts in determining the shape of the project. The first formative influence was I had the opportunity to co-teach a graduate level course at Manchester University in 2002 with an excellent colleague. This was a year after the draft sequences of the human genome were published in Nature and Science. It was the first time I taught the course, and we had students from diverse disciplines in the course- politics, philosophy, law and medicine. That experience convinced me there was a number of important issues worth thinking about more seriously, and that interdisciplinary dialogue and debate was absolutely crucial for tackling these issues. The issues were way too complex and challenging to approach with the armchair theorizing so prominent in analytic political philosophy.

A second event was my growing disillusionment with "ideal theory" in discussions of justice. I had completed this book on that topic a decade ago and its concerns informed the methodology I developed for this new book on the genetic revolution. I remember the merging of these two concerns (non-ideal theory and the biomedical sciences) became explicit in my mind after attending a talk by a philosopher on the topic of genetic enhancement. The author argued that genetic enhancements are morally permissible, assuming of course they were safe and equally accessible to all. During the question period I asked the author what their view was if the latter condition did not hold. Did they think genetic enhancements were morally permissible if they were not, at least initially, equally accessible to everyone in the world? I pointed out that such technologies would cost millions of dollars in research, and may or may not ever become a reality. Assuming they did become a reality they would be costly at first and thus not likely to be equally accessible to all. So I was curious if this philosopher still thought genetic enhancements were morally permissible in that scenario.

The response the speaker gave was that they were talking about what is permissible in ideal theory, so concerns about unequal access did not arise. This response let me bewildered and troubled. To me, the question of whether or not genetic enhancements were morally permissible was a live, pressing and interesting question precisely because concerns about safety, efficacy, and accessibility arise. Philosophers would not have to spend time thinking about the moral permissibility of such technologies if they were guaranteed to be safe, effective, cheap and available to all. What is controversial about such interventions? It would be like arguing that a free gym membership for all is morally permissible. The whole point of the intellectual exercise, for me, was to figure out what the proper attitude to take was in the non-ideal "here and now" context. Should we support or oppose the prospect of genetic enhancements? How much risk of harm is reasonable in this context? Should such technologies be privately or publicly funded, and why? But all of these important questions become null and void if one just declares they are a card-carrying member of the "ideal theory" club.

I could not help but feel that the type of response this philosopher made (and it is a very common attitude among political philosophers) was somewhat intellectually dishonest. Who, other than an analytic philosopher specializing in abstract, idealized accounts of distributive justice, would think invoking such fanciful and obviously false empirical assumptions could be a helpful part of the intellectual exercise and discussion? Instead of writing a book on ideal theory, that would be about ideal justice plus an "add genetics and stir" approach, I decided to undertake a much more burdensome but, I think, interesting project. I wanted to learn about the biological sciences, the role genes play in different diseases, the risks and costs associated with gene therapy, the evolutionary explanations of senescence and experiments on the biology of aging. Staying abreast of these scientific findings consumed most of my research for well over a decade. All the while I had no guarantee that a viable book could emerge from this effort. It was a very risky project. But one I felt compelled to undertake and could, professionally, afford to take as I continued to publish in more mainstream venues and topics in philosophy and political theory (so tenure and promotion were not put at risk).

In 2002 I was also fortunate to attend a Wellcome Trust weekend workshop on genetics, which involved getting a tour of the Sanger Institute where part of the human genome was sequenced. Participants in the workshop had the opportunity to extract the DNA from a strawberry and we also participated in group discussions related to the regulatory and ethical issues of genetic technologies. Engaging with scholars from different disciplines on these issues reinforced my conviction that interdisciplinary dialogue and outlook, rather than inward specialization (i.e. idealization and abstraction), was the way for me to move forward with this project.

I was very fortuitous to have the opportunity to spend my first sabbatical at Oxford University for the year 2006/07. I spent time with the theorists in the Centre for the Study of Social Justice and time among the philosophers working on topics in the biomedical sciences. It was a wonderful opportunity to develop new ideas, engage with very bright scholars in the field, and read and write. I also organized this conference on "Genetics and Justice". 7 years later, on my next sabbatical, I spent a term at UCLA where I taught a graduate version of my course on this topic to MA students in public policy. These diverse educative opportunities were crucial in helping to keep me motivated and focused on completing this book project.

Another important influence on this project was learning about, and engaging with, the scientific field of study on aging and longevity. In 2005/6 I was still primarily committed to writing a book on genetics and justice that was "intuition driven". This means the litmus test in terms of determining how defensible my normative prescriptions were were my own intuitions. When I first began to seriously consider life extending technologies I was unsure what my intuitions were. There seemed something inherently unfair about worrying about extending the human lifespan when so many people in the world died before reaching late life. So while I was not opposed to research on such technologies, and a potential aging intervention, I did not think it was a pressing concern. And certainly not a priority in terms of investing scarce public funding. But then I decided to seriously listen to the arguments of the biogerontologists who argued for greater public investment and support of their science. I was very impressed by what I heard and learned. I also began to learn about evolutionary medicine, and about global mortality and morbidity trends and then it all came together. While my initial intuitions did not tell me that slowing human aging was an important or viable aspiration for humanity, the rapid rise of chronic disease, the marginal health dividends of tackling specific diseases and the incredible advances being made with understanding how to modulate the aging process convinced that it was.

The final, and perhaps most important influence on my project was my laboratory-- the classroom. For more than a decade I taught undergraduate and graduate students a seminar on "Science and Justice" (which focuses on the genetic revolution). Over that time I estimate that approximately 150 students took my seminar at the University of Manchester, Waterloo University, Queen's University and UCLA. In these seminars I asked students what they thought about the issues, I presented different sides of the arguments, I presented my own positions and listened to, and engaged with, their objections. Year after year I became more convinced that political science students longed to engage in normative questions concerning the regulation of the biomedical sciences. And each year I found that existing normative frameworks were often ill-equipped to do justice to the complexity and nuances of the issues typically at stake in this domain. My students believed that science was vitally important to their future and they wanted to think cogently, imaginatively and rationally about the role science could play in helping to create a more humane and fair future. My teaching this class was an intricate part of my research for this book.

The “biologically modified” account of justice I develop is a theory of distributive justice that possesses three distinct characteristics:

(A) it brings insights from biology to the foreground of a normative analysis of the demands of justice. The fundamental orienting assumption of biologically modified justice’s is Dozhansky’s claim that “nothing in biology makes sense except in the light of evolution”.

(B) it focuses primarily, though not exclusively, on the novel benefits and burdens which may arise out of the genetic revolution.

(C) a biologically modified theory of justice adopts a particular kind of methodology. Rather than advancing a normative analysis that privileges idealized assumptions or abstract theoretical experiments, biologically modified justice emphasizes the importance of adopting a pluralistic, “contextual” analysis of the issues and topics it addresses. Biologically modified justice advances an account of justice that is much more interdisciplinary than the kinds of theories of justice typically advanced in political theory/philosophy. The account of the duty to aid advanced in Part 1, for example, is predicated upon insights from demography and biogertonology. The account of “genetic justice” developed in Part 2 modifies the demands of Rawlsian justice by taking seriously insights from epidemiology and genetics. The framing of the benefits of life extension draws on insights from prospect theory. The analysis of the scope and limits of reproductive freedom advanced in Part 3 relies upon the commitments of “deliberative democracy”. And finally the analysis of the creation and evolution of patriarchy invokes the account of historical materialism advanced by Karl Marx as well as insights from evolutionary biology.

Rather than relying on one theoretical tradition or championing one or two particular normative principles, biologically modified justice advances a pluralistic, contextual analysis. As such, many of the conclusions I reach are very provisional, as they are open to revision in light of new empirical discoveries and moral insights. Below are the provisional conclusions I argue for in the book:

(1) There is a pressing moral imperative to extend the human “biology warranty period” by slowing the rate of molecular and cellular decline. The goal of extending lifespan by retarding the rate of biological aging is distinct from the goal of preventing avoidable mortality by tackling each specific disease of aging (e.g. cancer, heart disease, and stroke).

(2) Inequalities in our biological capacities (e.g. ability to repair DNA damage, regulation of cell division, antioxidant defence, immunity, etc.) to realise the natural primary goods are to be arranged so that they are to the greatest reasonable benefit of the least advantaged (what I call the “lax biological difference principle”).

(3) there is a conditional moral presumption in favour of gene patents that satisfy a stringent utility requirement.

(4) There is a strong presumption in favour of procreative liberty and thus parents should have the freedom to utilize PGD for both medical and non-medical purposes. This liberty is subject only to such reasonable limits prescribed by law as can be demonstrably justified in a fee and democratic society.

(5) The degree and form of patriarchy present in any particular society is determined by the productive forces it has had at its disposal. Technological, material and medical advances that ease the pressures on high fertility rates (such as the sanitation revolution, vaccinations, birth control, etc.) are the real driving force behind the positive modulations to patriarchy witnessed in the twentieth century.

I wrote this self-reflective blog post on finishing this book primarily for my own benefit (it's a kind of therapy for me! :)), and for the possible benefit of junior scholars who might be slugging away on writing a book and perhaps struggle with finding the motivation to complete it. Why write, and publish, a book? The absolute worst answer to this question is-- "because I need to to get tenure and/or promotion!". It may be true you need to write a book to achieve those things, but why write *this* book, the book you think or hope you are writing? You must go beyond purely careerist instrumental reasoning to stay motivated and engaged in creative, worthwhile scholarly research. Engage in self-reflection frequently, so the following questions are alive in your mind at all times- "what is the significance of this project?", "Why should I be the person to write this book?", "Who am I writing for?" etc. These types of questions should be consistently returned to over and over again. At least doing so has helped me keep my motivation and attention focused on the end-game of completing this book. Perhaps others respond to different incentives.

The book is approximately 115,000 words in length. And here is the table of contents:

Chapter 1: The Genetic Revolution

Part One: The Duty to Aid in an Aging World

Chapter 2: Empirical Ethics and Singer’s Principle of Preventing Bad Occurrences
Chapter 3: The Duty to Extend the Biological Warranty Period
Chapter 4: Equality and the Duty to Retard Human Aging
Chapter 5: Framing the Inborn Aging Process and Longevity Science

Part Two: Genetic Justice

Chapter 6: Science and Justice
Chapter 7: Genetic Justice and the Limitations of Formulating Distributive “Ideals”
Chapter 8: Normative Theorizing about Genetics: A Response to Loi

Part Three: Patents, Reproductive Freedom and Patriarchy

Chapter 9: Gene Patents and Justice
Chapter 10: PGD and Reproductive Freedom
Chapter 11: Historical Materialism and Patriarchy


Once I get the final edits of this book completed (which still constitute a lot of work) I already have a contract for a textbook on genetics and ethics with Polity Press that needs to be completed, and then I hope to undertake some substantive new research on the topics of play, virtue epistemology, non-ideal theory and punishment.