Designer genes for `enhancement': will they wash?

The recent sci-fi movie GATTACA suggests that human genetic engineering can craft wonders, but that the price may be too high. It depicts a very near future in which high-technology breeding programmes have suppressed not only physical ugliness, addictive behaviour and inherited disease but also hope, humour, passion and faith.The film raised the fundamental question of the balance of benefits and risks of human genetic engineering, and this issue has a real-world analogue in the arena of public-health policy; the appropriate limits of genetic manipulation applied to humans for `enhancement' were debated recently at a major conference sponsored by the NIH's Recombinant DNA Advisory Committee1Gene Therapy Policy Conference, Bethesda, MD, USA, September 1997.11. Scientists there predicted that, within two years, researchers will propose gene-therapy experiments that, although initially intended to cure or ameliorate disease, could also be used to enhance a trait in healthy people. Participants cited, for example, research under way to restore lost hair and to strengthen muscles. Many participants in this conference emphasized the challenges posed by the advent of `enhancement gene therapy'.As one examines the antecedents of gene therapy and the precedents for medical interventions for enhancement, however, the issue seems less ethically and medically problematical. Gene therapy involves the insertion of normal or modified genes into cells of human subjects for either of two purposes: the first is to correct genetic or acquired disorders via the synthesis in vivo of missing, defective or insufficient gene products; the second is to augment desirable characteristics, and is performed in the absence of what we usually think of as `disease'.The debates surrounding gene therapy—whether a patient suffers from a condition that warrants treatment, the types and magnitudes of the risks, the issue of equal access to therapy, and the relationship between medical intervention and discrimination—are fundamentally no different from those surrounding other medical interventions. Moreover, gene therapy is part of a continuum of therapies that introduce new DNA to or modify existing DNA in patients. Allogeneic organ transplantation (from one human being to another), vaccination (which results in irreversible changes to the DNA of the blood cells that mediate immunity) and the administration of drugs to activate dormant genes (for example, the administration of the drug 5-azacytidine to patients with sickle-cell anaemia, to turn on long-inactive foetal haemoglobin genes) are all part of the continuum. Innovations such as gene therapy, even when used for enhancement, should therefore be treated similarly to other analogous medical interventions, except when scientific considerations dictate otherwise.There is no obvious basis for invoking a discriminatory, more-restrictive regulatory paradigm for gene therapy than for analogous experimental therapies. Such innovations should certainly not be rejected out of hand, particularly when existing societal oversight mechanisms already subject them to an extraordinary level of case-by-case review. Unlike many new surgical procedures, for example, which are completely unregulated or subject only to the approval of a hospital-based committee, there is a large array of entities, both local and national, with jurisdiction over gene therapy. In the USA, these include hospital-based Institutional Review Boards, company- or university-based Institutional Biosafety Committees, the NIH Recombinant DNA Advisory Committee, the NIH director and the Food and Drug Administration.Anticipating requests by people asking physicians for gene therapy to grow taller, increase their muscle mass or alter their skin colour, a few critics—including prominent gene-therapy researchers—have expressed grave reservations. W. F. Anderson (University of Southern California, Los Angeles, CA, USA) has written, for example, that `until we have acquired considerable experience with regard to the safety of [gene therapy] for severe disease, and society has resolved at least some of the ethical dilemmas that this procedure would produce, non-therapeutic use of genetic engineering should not occur'. He has gone even further, denouncing gene therapy for enhancement as `medically hazardous, morally precarious, and philosophically debatable'.However, the critics of gene therapy for enhancement do not take into consideration the latitude that our society affords those who choose to enhance their physical appearance or health in other ways. For example, drugs are frequently used for relatively trivial maladies, such as modest obesity, anxiety, stuffy nose, age spots and baldness. There have been numerous clinical trials of appetite suppressants, memory-stimulating and mentation-enhancing drugs, and of human growth hormone for hormonally normal but shorter-than-average children. Thus, arguments against testing gene therapy for enhancement should be weighed against society's permissiveness towards experimental medical and surgical interventions in general, and those intended for enhancement in particular.Patients' psychological wellbeing and freedom to choose are also important considerations. `Mere' enhancement is not trivial to the adolescent boy who is six inches shorter than anyone else in his class, nor to the many people of either sex who suffer hair loss. One need look no further than the considerable societal demand for cosmetics, cosmetic surgery and health clubs to be reminded how important people consider it to look and feel good. In a 1992 editorial on gene therapy, the Economist considered this question.What of genes that might make a good body better, rather than make a bad one good? Should people be able to retrofit themselves with extra neurotransmitters to enhance various mental powers? Or to change the colour of their skin? Or to help them run faster, or lift heavier weights?... Yes, they should. Within some limits, people have a right to make what they want of their lives.In view of what people want and what society permits in other realms, should those limits not be very wide?