Tuesday, May 02, 2006

Genetics and Justice (Where to Begin?)

Rapid advances in our genetic and biological knowledge raise a number of interesting challenges for theories of distributive justice. Such theories traditionally focus on the distribution of socio-economic goods (e.g. wealth, opportunities for education, etc.). But how does one equip such a theory to take seriously the prospect that our *genetic endowments* themselves might become part of the “currency” of distributive justice? How much weight, for example, ought we to place on the aspiration to fairly distribute our genetic potentials for health, intelligence, etc. versus fairly distributing social determinants that will also impact the distribution of these natural primary goods? And how do we balance the duty to prevent harm with respect for procreative liberty?

The genetic revolution raises a myriad of different concerns ranging from the scope and limits of reproductive freedom to genomic intellectual property and genetic discrimination. To take such concerns seriously I believe it is important (following on from my previous post on “What is political theory?”) to keep John Dunn’s three skills in mind as theorists attempt to construct accounts of what justice will require in the “post-revolutionary” world. A world where we may be able to directly intervene (e.g. via genetic therapy) in the natural lottery of life.

Recall the three skills highlighted by Dunn:

1. Ascertaining how we got to where we are and understanding why things are this way.

2. Deliberating about the kind of world we want to have.

3. Judging how far, and through what actions, and at what risk, we can realistically hope to move this world as it now stands towards the way we might excusably wish it to be. (Dunn, 1990, p. 193)

Keeping these three skills in mind reveals how arduous the task ahead of us is and the need for interdisciplinary dialogue and expertise. Firstly, the first skill requires us to have a good understanding of our biology. What are genes? And what role do they play in the development of different phenotypes (disease, cognition, personality, etc.)? To exercise this skill one must learn about the complex relationship between our biology and our environment. Sometimes the story of human disease is the story of a single malfunctioning allele (single-gene disorders). But in the case of the most prevalent multifactorial diseases (like cancer and heart disease) the story is a complex one- a combination of environmental factors and mutations in multiple genes. Sometimes the story of mitigating genetic disadvantage is a story about direct intervention (e.g. gene therapy) but in many cases we can avoid the disadvantage by pursuing other kinds of interventions (e.g. changing diet, exercising, etc.). The severity and onset of the disadvantages our genes confer can also vary from minor (e.g. slight learning disabilities) to major (e.g. premature death) and from early to late onset. These kinds of considerations will have an impact on how stringent the duty to directly mitigate genetic disadvantage is.

In addition to understanding our biology, this first skill also requires us to have a good understanding of our legal, social and political institutions. We need to understand why they have evolved they way they have, and appreciate the virtues and limitations of these diverse and complex institutions. When it comes to considering the issue of genetics and justice it is important, for example, to bear in mind the injustices of past eugenic movements (e.g. involuntary sterilization of the “unfit”). Furthermore, we must recognise that advances in biomedical science are often costly and risky. Biotechnology is a multi-billion dollar industry and these (often experimental) interventions have risks. These costs and risks will complicate the story of what constitutes a just regulation of human genetic interventions. Who should fund biomedical research? And how much risk of harm is acceptable before an intervention can be deemed legally permissible (and who should be the judge of this)? Knowing how we got to where we are, and why things are this way, is important for deliberating about the kind of society we want.

The second skill requires us to exercise our abstract philosophical skills. What is the kind of society we should aspire towards in terms of our genetic constitutions? Should we strive to ensure that everyone has a genetic decent minimum (and what would constitute such a minimum)? Should we invoke some notion of “genetic equality”? Or is a principle of maximin appropriate? Perhaps we should reject any “patterned” principle of “genetic justice”. It is important that philosophers temper their exercise of this second abstract skill with the first and third skills. Empirical knowledge of our biology and the challenges we face ought to have a large impact on the kind of distributive ideal we seriously entertain and debate. This will help ensure that we avoid prescriptions that are based on poor science (e.g. genetic determinism) or prescriptions that ignore the fact of scarcity or the risks associated with both genetic intervention as well as non-intervention.

The third skill requires us to place the aspiration to mitigate genetic disadvantage within the larger context of “societal fairness”. Directly mitigating the natural lottery of life (via genetic therapy, for example) is only one of many competing demands justice places on us as a society. We should not take the insular view that mitigating genetic disadvantage is the only requirement of justice (nor should we ignore this duty). Such an aspiration must be balanced against other pressing demands (e.g. combating poverty, etc.). So this third skill requires a theorist to adopt a wide lens when determining what would constitute a fair, proportionate and effective strategy for combating the various forms of disadvantage that pervade our societies.