Cosmetic Genetics and the Federal Trough
Mary Rorty
October 25, 2001
Stanford University
1. There's a lot of hype about the promises that lie in our genetic future.
Both Singer and Sloterdijk raise troubling questions about a future in which genetic interventions will become increasingly technologically feasible. The correlation of specific genes with there phenotypic manifestations begins to suggest the possibility in the future of diagnosing, even perhaps altering, characteristics that now seem completely in the hands of the natural lottery. If we now, in our concern for the life chances of our children, are willing to give then nose-jobs and braces, SAT cram courses and brand name sneakers, what about the possibilities these newest promises of science open for the opportunities we wish to allow for our children? Are we facing the ultimate yuppie demand? Cosmetic surgery not only of physical features, but of life span, mental capacities, disease susceptibilities - in sort, cosmetic genetics - in the form of enhanced reproductive outcomes via ronsangels, where the elite gametes meet to greet - or genetic therapies (eliminating genetic defects prenatally via ART).
2. The perils are as impressive as the benefits. The popular press alternates between horror stories [GATTACA, the Boys from Brazil] and headline promises of miracles. The realistic and useful discussions are often in small print buried in esoteric journals. This isn't a unique case, of course: It's as old as the Pandora legend. What would be a problem would be to emphasize only one side of the promise/peril coin ...
3. The promises are hedged about with numerous practical and theoretical problems:
- we don't really know a lot yet (but there is a great deal
of pressure to get approval and in our country federal funding for
the research)
- I've described it as "cosmetic genetics," but really it's very different in practice from cosmetic surgery: it's not done to ourselves but to our children; they can't consent, & we can't predict the eventual outcomes. Further, the results are more momentous and less reversible.
Every parent dreads the conversation with your teenager that starts out "Why didn't you..." and think how much worse it could be if Laura can say "you ruined my life, mother! Look at these hands! I don't want to play the piano! I want to paint minatures!"
4. In cosmetic surgery, an adult decides on the basis of life experience that this person wishes to make some alterations in their body. One of the most important differences between cosmetic surgery and cosmetic genetics is the question of who is going to be the decision maker, and on the basis of what criteria? What alterations will be acceptable candidates for prenatal selection or therapy?
Despite the rhetoric of "parents as decision makers," it's not something that I can do myself by taking a pill; genetic alternations are something that only the experts can do to me, or to my children. So we should have no illusions of individual control. What little control we have may be very limited, and negative in nature. Consider the model of other medical treatments; we can refuse, but we cannot demand treatments. Someone who is not the parent is going to be responsible for deciding (and enforcing) whether I have the OPTION of giving Laura the perfect piano-player hands.
Indeed, as many authors have noted, the existence of a treatment or therapy tends to develop social reflections or projections: social expectations that if I can prevent the birth of a Downs Syndrome baby, for instance - if I have the information and a choice to act upon it (or not) - there is a social expectation, a pressure that would not be there if I didn't have a choice about what kind of baby (boy or girl, Downs or not) to have. So in psychological practice, my range of options may not be so much enhanced, but rather decreased, by the genetic knowledge.
So: who is that decision maker going to be? Several commentators have pointed out the problem of having the physician as the decision maker: it changes the nature of medicine. The genetics specialist is not Marcus Welby. Nor is he, probably, the obstetrician that will deliver the baby or the pediatrician who will care for him. Indeed, Marcus Welby has practically vanished from American medicine; and if he were still around, he certainly wouldn't want the job of discussing with you what is in your child's best interest, save in a very narrow sense.
The one thing that seems certain about our genetically expanded future is that it is NOT going to be a market place: I'm not going to be able, as Nozick no doubt facetiously suggests, to go to a "genetic supermarket," which will meet the individual specifications ["within certain moral limits"] of prospective parents. [as he would no doubt be willing to admit, there is a lot that has to go into that qualification, "within certain moral limits."]
Cosmetic (or even therapeutic) genetic services are almost certainly not going to be commercially driven in our genetic future. What IS, I think we have to admit, commercially driven today is the foment of public opinion that is justifying the huge investment in genetic research in the last decade, and preparing the way for continuing and increasing investments in genetic research in the coming decades. Genetics has been and will continue to be BIG BUSINESS. It's at the heart of the big business that is American medicine and it is well funded by both public and private money. It's no accident that there's so much discussion of it in both the popular press and the professional journals. Indeed, some of the best discussions of the ethical implications of the human genome have been funded by federal money: ELSI money from the national institutes of health, that percentage of research money that is dedicated to ethical, legal, and social implications of the human genome. We'd probably be better off if the market place did take the clear and obvious forms that Nozick suggests. We'd have more real choices.
So: who is going to be the decision maker?
I agree with Peter Singer that given the choice between the market and the government (or in our case, between the interest groups and the government) we are probably better off going with some form of regulation and control. We need to find a reasonable decision making process that involves not just the concerned researchers, but other constitutencies as well. We have some interesting examples in this country of three presidential advisory committees like NBAC, or the RAC (and a new one under formation now under the leadership of Leon Kass).
We have to face up to the fact that we can't draw firm lines between therapy and enhancement, and be prepared to deal with that range of ambiguities on a category by category and maybe even on a case by case basis (on several levels of decision-making). I think we are already recognizing that it is going to be hard to preserve the line between somatic and germline interventions in anything but the most sophistical sense [ "I know it had germline implications - but I only intended the somatic ones..."] as well as the distinction between therapy and enhancement. The latter distinction will be harder or easier depending on how seriously the decision makers take the rhetoric of parental choice.
There are a few things I'd like to see in the discussion of the implications of genetics.
ONE is greater attention to the fact that this is a global issue, in a small world - not just a question of national interest. There are a number of international commissions discussing similar issues: the UN, the European Community, and various national commissions as well. We need to pay a bit more attention than we have in the past to what our fellow human beings think about these important common issues.
ANOTHER thing I'd like to see - and this is not a regulatory issue, but a social one - is some way to address our black and white approach to important moral issues. We need some stronger social recognition of responsibility, degrees of respect for life forms. In some of his other work Singer has argued for expanding circles of recognition of other forms of life; I think we could do a bit of work on expanding circles of recognition for human life forms as well.
Finally, I'd like to underline the theme that has recurred several times this evening: issues of justice. What concerns me more than the successes, whether the product be socially useful automatons or individually desirable yuppy geniuses - is the question of what happens to the failures along the way - the products of genetic experiments who for one reason or another aren't up to snuff. More dangerous than creating an elite class of geniuses is the chance of creating yet another class of the disregarded, the disenfranchized, the dispossessed - whether that be the 'natural man' who is outclassed by his genetically altered betters, or, more likely, the botched results of experiments that failed, those not fortunate enough to have died when genetic science proved not quite adequate to its task.