Breaking Bioethics Special Section In Pursuit of Perfect People The Ethics of Enhancement Gene Therapies and the Pursuit of a Better Human SARA GOERING As a philosopher interested in biomedical ethics I find recent advances in genetic technologies both fascinating and frightening Future technologies for genetic therapies and elimination of clearly deleterious genes offer us the ability to get rid of the cause of much human suffering seemingly at its physiological root But memories of past eugenics programs gone horribly awry whether we speak of Hitler s program California sterilization laws and practices of the 1920s or even contemporary practices such as attempts to work out deals that exchange sterilization for early prison release 1 must make cautious our initial optimism for these generally well intentioned programs Most often the scientist proceeds in research with the best of intentions but that does not make all scientific investigation worth pursuing Surely no one would dispute the claim that the aim of bettering humanity and or our own children is morally acceptable Indeed most of us see as ideal a world in which every parent works toward improving the lot of his or her child or the lot of all of our children But while no one denies the importance of this quite general goal we are still left with difficult issues about how we ought to proceed in addressing that goal When we try to dodge diseases or disadvantages through genetic intervention are we solving problems or just moving them to a different level I want to briefly address two quite general questions in regard to this topic First what means should we take in trying to better our children Second how are we to decide what really counts as bettering them I do not claim to solve these difficult issues here but only to consider some ways we might approach the problems Consider the various ways in which we try to better our children First and foremost we try to educate them That is we provide public education for all children with the intention of teaching them not only how to read write and do arithmetic but also how to function in this society and how to make important decisions in their lives No one questions this means to bettering our children unless they find fault with particular styles of teaching for instance they see the teacher as indoctrinating a particular view rather than presenting basic facts and promoting the child s own rational critical faculties in assessing those facts Generally as long as the education exercises the child s mind and allows the child some autonomy in regard to how he or she will understand the material this means of bettering is considered morally acceptable and even required In addition to education we find it morally acceptable to better children by giving them appropriate medical care If a child needs surgery or a painful treatment to survive or to thrive we allow ourselves room to do what is best 330 Cambridge Quarterly of Healthcare Ethics 2000 9 330 341 Printed in the USA Copyright 2000 Cambridge University Press 0963 1801 00 12 50 Gene Therapies and the Pursuit of a Better Human for the child even if that may involve unavoidable pain that the child is not able to consent to Furthermore we often go beyond merely treating clearly defined diseases and actually allow enhancement of our children in the medical setting We regularly give our children vitamin supplements vaccinations and dental enhancements e g braces and we generally do not blink at such interventions 2 Thus we have no clear moral concern with imposing medical treatments paternalistically so long as we are fairly certain that we are promoting the child s best interests There are no doubt numerous other ways that we try to make things better for our children and future generations Many of them are indirect we try to balance the national budget or at least keep it under control we try to pass legislation that will save the environment and preserve a fair quality of living for future generations and we put federal and state money into exploratory research that is unlikely to produce immediate results but may lead to improvements in future lives So whether we are trying to enhance children themselves or their environment we are generally quite at ease with working toward improvements But how do genetic therapies fit into this classification If we are speaking of somatic 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 then we 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 ourselves in the Parfitian paradox of future generations 3 Should we be compelled to try to make things better for unidentifiable future persons What could the compelling reason be Without wading through the vast literature debating this topic I think it is safe to say that most of us are at least willing to admit that duties of beneficence and intuitions about morality suggest that we do care about these future people whether or not we are required to do so by rules of justice But in trying to work things out for future people or even for young children who are not considered competent to decide for themselves we must decide what kind of interventions are morally legitimate and most likely to be truly beneficial If we think that a genetic therapy will benefit a fetus or child should we perform that therapy The initial response might appear to be a resounding yes This sort of treatment appears to get to the root of the problem and eliminates the need for any suffering from the disorder Some common arguments posed against genetic interventions generally have been rather soundly disposed of in the relevant literature e g arguments from playing God from messing with nature from the inevitability of slippery slopes 4 But in a society that tends to overvalue the quick fix solution we might do well to exercise some caution even here First we might get unexpected results If we perform genetic therapies to remove or change a clearly deleterious gene then we might find that other important physical or psychological traits were also controlled by that gene or by its influence on another gene or its expression The commonest example here is the link between sickle cell trait and resistance to malaria