Breaking Bioethics Special Section:In Pursuit of Perfect People: The Ethics of EnhancementGene Therapies and the Pursuitof a Better HumanSARA GOERINGAs a philosopher interested in biomedical ethics, I find recent advances ingenetic technologies both fascinating and frightening. Future technologies forgenetic therapies and elimination of clearly deleterious genes offer us the abil-ity to get rid of the cause of much human suffering, seemingly at its physio-logical root. But memories of past eugenics programs gone horribly awry (whetherwe speak of Hitler’s program, California sterilization laws and practices of the1920s, or even contemporary practices, such as attempts to work out deals thatexchange sterilization for early prison release)1must make cautious our initialoptimism for these generally well-intentioned programs. Most often the scien-tist proceeds in research with the best of intentions, but that does not make allscientific investigation worth pursuing.Surely no one would dispute the claim that the aim of bettering humanityand/or our own children is morally acceptable. Indeed, most of us see as ideala world in which every parent works toward improving the lot of his or herchild, or the lot of all of our children. But while no one denies the importanceof this quite general goal, we are still left with difficult issues about how weought to proceed in addressing that goal. When we try to dodge diseases ordisadvantages through genetic intervention, are we solving problems or justmoving them to a different level? I want to briefly address two quite generalquestions in regard to this topic. First, what means should we take in trying tobetter our children? Second, how are we to decide what really counts as “bet-tering” them? I do not claim to solve these difficult issues here, but only toconsider some ways we might approach the problems.Consider the various ways in which we try to better our children. First andforemost, we try to educate them. That is, we provide public education for allchildren with the intention of teaching them not only how to read, write, anddo arithmetic, but also how to function in this society and how to make impor-tant decisions in their lives. No one questions this means to bettering ourchildren, unless they find fault with particular styles of teaching (for instance,they see the teacher as indoctrinating a particular view rather than presentingbasic facts and promoting the child’s own rational critical faculties in assessingthose facts). Generally, as long as the education exercises the child’s mind andallows the child some autonomy in regard to how he or she will understand thematerial, this means of bettering is considered morally acceptable and evenrequired.In addition to education, we find it morally acceptable to better children bygiving them appropriate medical care. If a child needs surgery or a painfultreatment to survive or to thrive, we allow ourselves room to do what is “bestCambridge Quarterly of Healthcare Ethics (2000), 9, 330–341. Printed in the USA.Copyright © 2000 Cambridge University Press 0963-1801/00 $12.50330for the child” even if that may involve unavoidable pain that the child is notable to consent to. Furthermore, we often go beyond merely treating clearlydefined diseases and actually allow enhancement of our children in the medicalsetting. We regularly give our children vitamin supplements, vaccinations, anddental enhancements (e.g., braces), and we generally do not blink at suchinterventions.2Thus we have no clear moral concern with imposing medicaltreatments paternalistically, so long as we are fairly certain that we are pro-moting the child’s best interests.There are no doubt numerous other ways that we try to make things betterfor our children and future generations. Many of them are indirect: we try tobalance the national budget (or at least keep it under control); we try to passlegislation that will save the environment and preserve a fair quality of livingfor future generations; and we put federal and state money into exploratoryresearch that is unlikely to produce immediate results but may lead to improve-ments in future lives. So whether we are trying to enhance children themselvesor their environment, we are generally quite at ease with working towardimprovements.But how do genetic therapies fit into this classification? If we are speaking ofsomatic cell therapies (performed on the body cells of a fetus, infant, or adult,so that the genetic changes will not be passed on to the next generation), thenwe at least have an identifiable being who may be benefited by the changes;but if we speak of germline genetic therapies, performed pre-embryonically,then what is in question is who will come into existence, and we find ourselvesin the Parfitian paradox of future generations.3Should we be compelled to tryto make things better for unidentifiable future persons? What could the com-pelling reason be? Without wading through the vast literature debating thistopic, I think it is safe to say that most of us are at least willing to admit thatduties of beneficence and intuitions about morality suggest that we do careabout these future people (whether or not we are required to do so by rules ofjustice). But in trying to work things out for future people (or even for youngchildren who are not considered competent to decide for themselves), we mustdecide what kind of interventions are morally legitimate and most likely to betruly beneficial.If we think that a genetic therapy will benefit a fetus or child, should weperform that therapy? The initial response might appear to be a resoundingyes. This sort of treatment appears to get to the root of the problem andeliminates the need for any suffering from the disorder. Some common argu-ments posed against genetic interventions generally have been rather soundlydisposed of in the relevant literature, e.g., arguments from playing God, frommessing with nature, from the inevitability of slippery slopes.4But in a societythat tends to overvalue the quick fix solution, we might do well to exercisesome caution even here.First, we might get unexpected results. If we perform genetic therapies toremove or change a clearly deleterious gene, then we might find that otherimportant physical or psychological traits were also controlled by that gene (orby its influence on another gene or its expression). The commonest examplehere is the link between sickle cell trait and resistance to