Thursday, June 28, 2007

Genetic Justice (Where to Begin?...#2)

This long post is an update to this earlier post.

At the “Genetics and Justice” conference next week I am giving a 30 minute presentation entitled “Genetic Justice: Where to Begin?” . That talk will build upon the ideas expressed in my earlier blog post. And this talk will also outline some of the central methodological concerns that underpin my book-in-progress on this topic.

Recall, from various posts scattered at places like here, here and here, that I have expressed many discontents with the mainstream approach that moral and political philosophers take to applied ethics and distributive justice. Working on the issue of genetics and justice for almost 7 years now has really had a profound impact on how I view the (in)adequacy of contemporary theories of distributive justice. So my thoughts in this post might explain why I have become disillusioned with some of the theories I was once committed to.

Firstly, lets start with what a theory of genetic justice is a theory of. A theory of genetic justice seeks to answer the following question: what would constitute a fair distribution of genetic endowments? From the moment we are conceived, we each inherit our own unique genetic endowments (two copies of most genes, one from our mother and one from our father). And the genes we inherit can have a profound impact on many different phenotypes, like our health, vigour, intelligence and imagination (what Rawls calls the "natural primary goods").

Historically it has been the case that the distribution of genetic endowments in any given society has been the result of happenstance. That is, the distribution was the random result of the procreative choices of parents and our evolutionary legacies as a species. But as we move from a “pre-revolutionary” scenario (that is, one where the natural lottery of life is beyond our control) to a “post-revolutionary” scenario we need a theory of genetic justice.

In the post-revolutionary scenario the basic structure (to use Rawls’s terminology) of society influences the distribution of genes. That is, the regulatory framework we implement for biomedical research will determine who receives these benefits (e.g. genes that help prevent disease, increase strength, intelligence, boost our immunity, help promote valued behavioural characteristics, the list is almost endless!) and how quickly (and costly, safe, effective, etc.) these benefits are realised.

How would we know what constitutes a just or unjust distribution of the by-products of the genetic revolution? Having a theory of genetic justice on hand will help ensure that we respond, in a fair and proportionate manner, to the duty to mitigate genetic disadvantage.

We are currently in a transition stage between the pre and post revolutionary scenarios. I have already posted numerous links to the stories describing how the genetic revolution is changing our lives (like the story of John Robertson, Parker DesLauriers , Nathan Klein, Hashmukh Patel, those with CF, etc. and those are only a small fraction of the 1000+ clinical trials for gene therapy that are occurring worldwide).

If we hope to implement the demands of genetic justice we must begin to take the question of what constitutes a fair and proportionate response to genetic disadvantage seriously. Otherwise we risk committing an injustice against the most vulnerable members of our societies. So where should we begin? That, in my opinion, is also a very important question.

I think the inclination for most moral and political philosophers will be to start from their favourite normative theory- utilitarianism, Kantian ethics, egalitarianism, libertarianism, feminism, etc, etc… - and simply pursue what I call the “add genetics and stir” approach. That is, add genetics to the currency of distributive justice and simply incorporate it into one’s favoured distributive principle (e.g. liberty, equality, sufficiency, priority, etc.) The central aim of my talk next week will be try to persuade normative theorists from doing exactly that.

Changing old patterns of thought is tough, but it is something we must be prepared to do if we want our normative theories to help prepare us for meeting the complex myriad of challenges we now face, and will in the decades to come.

So what’s wrong with the strategy of “add genetics and stir”? Part of my long answer would be a beef with the principled approach to justice more generally (see here) But to make a long story short… the strategy of the “add genetics and stir” approach would no doubt be dominated by what can be called “first-best” conceptualism. I admit that once I started working on genetic justice this was the tactic I first took. But the more I learned about the empirical considerations at stake the more I realised that appeals to the something like the Priority View, or Sufficiency, for example, was not going to be enough to make serious headway on these issues. And so I backed away from the aim of trying to develop a “first-order” social theory and instead become more interested with bringing to the fore the complex myriad of concerns that arise in this context.

The discipline is certainly not designed to reward this kind of deviation from the norm and so it requires a theorist to be willing take some risks. But I had reached a stage in my career such that I could afford to take such risks and this is a topic I am passionate about and thus refused to let the stagnancy of the status quo quash my enthusiasm to pursue interdisciplinary research. Instead of waiting for the solution to arise from a technical philosophical paper in the latest issue of Ethics or PPA, I realised my energies were best spent trying to keep abreast of the actual empirical work being done in the field of human genetics. And so, at least when it comes to this part of my research, I am more likely to read (and get excited by) a piece in the latest issue of Science or Nature Genetics than I am most philosophy or political theory journals. Sure most of the technical science stuff goes way over my head, but exposing oneself to just periodic updates in the field helps one get a sense of the “big picture” (e.g. where the science is, where it might go, the obstacles, the breakthroughs, etc.).

Rather than spending most of my time considering the counterfactual question of what genetic constitutions people would chose in a Rawlsian original position, I have learned about the role genes and environment play in the development of disease, the different obstacles facing experimental interventions like gene therapy, and the role intellectual property plays in biomedical research. And I have only begun to scratch the surface. But I am convinced that normative theorists should spend more time being exposed to these empirical considerations rather than investing most of their energies into abstract hypotheticals. My empirical explorations thus awoke in me a desire to ask questions I never really asked before (e.g. what is the aim of normative theory?) And thus delving into the empirical has had a profound impact on my philosophical sensibilities (for the better, in my opinion!).

All this has lead me to take a much more pluralistic, and provisional stance on the issue of genetic justice. And this stance is the one that I now believe is the just response. And so I want my theory to inspire a moral discourse that does justice to the complex tradeoffs involved with these decisions, rather than bracketing them by ignoring the constraints of scarcity, or our intrinsic vulnerability, etc.

OK, so lets give some real details now. Where do we begin? Recall from my earlier post that I recommend following John Dunn’s approach to political theory. According to this approach, "the purpose of political theory is to diagnose practical predicaments and to show us how best to confront them". So what are the predicaments raised by the genetic revolution and how should we confront them? That is my main concern. Here I touch very briefly on some issues that should inform our answers to those questions.

Dunn claims that a theorist must exercise the following three skills:

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)

For now I will limit my discussion to some of the important issues that arise when we pay attention to 1.

So where are we? With respect to the distribution of our genetic potentials for the natural primary goods, we have a situation of genetic diversity. In many respects this is good thing- it makes the world more interesting by having variety, it helps secure the perpetuity of the species, etc. But there is also a downside to this diversity- its inequality. In particular, the dire life prospects it imposes on the genetically disadvantaged.

So how did we arrive at this situation? Why are things this way?

Sometimes the story of human disease is the story of a single malfunctioning allele (e.g. single gene disorders like HD). But if we consider the most prevalent diseases, like cancer, these are multifactorial conditions- they arise from a combination of environmental factors and mutations in multiple genes.

One can appreciate these complexities by asking the question: why do we develop cancer? There are two kinds of answers to this question, both are important.

The first answer is to focus on the proximate causal mechanisms- genes and environment. So we need to bear in mind that both internal (e.g. faulty BRCA genes can increase risk of breast cancer) and external factors (e.g. smoking can increase risk of lung cancer) can cause cancer. By appreciating the complex role genes and environment play we will not treat genetic justice as if it exhausts the demands of distributive justice more generally.

In addition to our genes, our education, wealth, access to basic healthcare, etc… are all important parts of the story of how different phenotypes develop. And thus we should not ignore these other considerations when deriving what the principles of genetic justice are. If an account of genetic justice is primarily driven by “first-best” conceptualism then it will not take these empirical considerations seriously. And thus it won’t yield prescriptions that are, “all-things-considered”, sage and just.

There is a second important answer to the question- Why do we develop cancer? I noted this before. This answer takes a “big picture” perspective of our look at the bigger causal networks at play. Cancer risk is underpinned by intrinsic fallibility. It reflects our evolutionary legacy. Recall this passage from Mel Greaves that I emphasized before:

The blind process through which we and other species have emerged carries with it inevitable limitations, compromises and trade-offs. The reality is that for accidental or biologically sound, adaptive reasons, we have historically programmed fallibility. Covert tumours arise constantly, reflecting our intrinsic vulnerability, and each and every one of us harbours mutant clones with malignant potential.

Having an informed view of the kind of biological creatures we are will have an important bearing on what we think the demands of justice are. For example, many prominent accounts of just healthcare invoke the notion of “normal species functioning” and use this as a benchmark for determining if a demand of justice arises (and thus treatment should be provided). The story I have just outlined shows why this benchmark, and the therapy/enhancement distinction, is misguided. We are, as a species, intrinsically vulnerable. There is no “disease-free” or “risk-free” benchmark from which we can derive the principles of genetic justice. So the important question is- what constitutes a fair and proportionate response to all risks (e.g. genetic, social, etc). We must grapple with the difficult issue of tradeoffs, something the notion of “normal species functioning” downplays or ignores.

The real important questions, when making a determination if a genetic intervention is just, is not “will it restore normal species functioning”, but rather:

(1) what is the likelihood that the harms of non-intervention will be realised?
(2) how severe are these harms?
(3) what is the likelihood that intervention will have the desired results?
(4) What are the costs of intervention (and non-intervention)?
(5) How safe, efficacious and costly are other forms of intervention (e.g. environmental intervention)?
Etc., etc…..
These tough questions are ignored if we invoke the model of normal species functioning and the principle of a genetic decent minimum. Such idealized principles distract us from the real important questions and raise the danger that the principles of genetic justice will be insulated from the larger demands of distributive justice.

Let me give two more examples that illustrate the importance of appreciating our evolutionary history.

Recall the findings reported here concerning the aggression-related gene. People who have this gene, especially males, have a hyperactive alarm center and under-active impulse control circuitry that biases their brain towards impulsive, violent behaviour. Why do some people have this gene? Again, if we reflect on our history we can appreciate why this is the case. In a Hobbesian state of nature, having this gene could be beneficial. It is better to err on the side of defection than be naturally inclined to trust people. But this gene is not advantageous in all social settings. In particular in modern capitalist societies. Indeed, it could be disadvantageous. So the judgements we make about the value or disvalue of particular genetic traits will depend on background considerations about the society in question.

Here is another good example- Sickle Cell Disease (see here). This disease is an inherited disorder in which red blood cells are abnormally shaped. It can cause serious infections, damage to body organs etc. If you only inherit one copy you have the sickle cell trait, and if you inherit both copies you develop the disorder.

In the United States this condition mostly affects African Americans? Why? The answer has to do with the evolutionary history of West Africans (watch the useful PBS video here). 4000 years ago malaria came to West Africa. Having one copy of the sickle cell gene protected one from malaria, but having two copies caused the disease. So Nature pursues its own tradeoffs to protect us as a species, sometimes with tragic results for us as individuals.

So the lesson normative theorists can learn by exercising this first skill, in the context of a theory of genetic justice, is that by paying attention to our actual history and biology (rather than invoking abstract idealized hypotheticals) we realise that diseases vary in terms of the role genes and environment play, their severity, age of onset, possible ways of treating them, etc… This is important for one’s normative theory because these empirical considerations ought to inform the judgements we make concerning what constitutes a fair and proportionate response to genetic disadvantage.

I have only touched (very briefly) on the first skill. There is much more to be said here. But I’m afraid this will have to suffice for now (for the longer story come along to the Conference on Monday!).