'Reprogenetics'--author's reply.THE ASSOCIATION OF INDIvidual choice in reproductive matters with a market in reproduction runs through many if not all of the responses to my article ("'Reprogenetics': Hype, Phobia and Choice," Winter 2003-4). Barbara Katz Rothman warns of a free market in "baby-making kits, treatments, genes and embryos, and drugs and surgeries." Americans value choice, she tells us "only in the narrow market sense: any customer with the money can buy virtually anything." For Neil Levy, "the fact that the current system of regulation is ill-motivated does not by itself give us reason to advocate a libertarian free-for-all. There are many problems with markets." Thomas Shannon believes that I "vastly underestimate the place of the market in the US." Given the restrictions on federal spending on clinical services and research using embryos, it is inevitable that the private sector should play such a large role in America. As I indicated at the end of my article, it would vastly improve the situation if public funds could be spent on such services and research. In the UK, the government is edging towards a national policy of funding a part of a woman's IVF treatment, whether it is a response to infertility or to a risk of a genetic disorder. But is it a good thing that restrictions are placed on parents in the choices they can make? That was the gist of the issue I wanted to highlight. I do not believe that choices are so influenced or "constructed" by the market or a dominant "consumerist" ideology as to make them troublesome. Or, to put it another way lest I be accused of naivety concerning the way society shapes the choices on offer: all our choices are social, but does that mean we should restrict individual choice in this area? On the whole, I do not agree with Rothman about the pressures on women. The impulse to have a child of one's own, which is a fairly universal impulse, may involve sperm donation just as it may involve egg donation. It does not imply the degree of social pressure she implies, nor does it involve particularly "dangerous technologies." And while I share with Levy and Shannon a concern about "gene-hype," an example of where genes do have a powerful influence is single-gene disorders and immune reaction, against which we are able to select. My central aim was to discuss the legitimacy of the choices we can make today, and to warn of the broader dangers of hype, one of the uses of which is to frighten us into restrictive regulation of current practices, in order to prevent a "slippery slope." JOHN GILLOT London United Kingdom JOHN GILLOTT HITS THE nail on the head when he says "the UK regulators seem to have alighted upon the idea of raising theoretical or possible harms, on the basis of little or no evidence, as a mechanism to regulate and restrict access to innovative application of reproductive and genetic technologies." Gillott mentioned embryo screening with tissue typing (so-called "savior sibling" procedures) and sex selection for non-medical reasons as examples in which the Human Fertilisation and Embryology Authority (HFEA) has raised concerns about the safety of PGD in order to curb particular uses of the technology. But this precautionary approach is being used in its regulation of more traditional fertility treatments too. In December 2003, the HPEA banned a procedure called "egg giving." Aimed at women who would not otherwise be able to pay for IVF treatment, egg giving offers a reduced price IVF cycle in return for donated eggs. The woman undergoes one cycle in which she donates all the eggs collected. Then she undergoes a further, cut-price, cycle, using all her eggs. The HFEA'S reason for the ban on egg giving is the risk of a condition called ovarian hyperstimulation syndrome (OHSS). OHSS, which appears in about one percent of IVF patients, is caused by an adverse reaction to the ovary. stimulating drugs used in most IVF cycles. Although the condition is serious and women affected need hospital treatment, OHSS is usually resolved within a few weeks. Of those women affected by the condition, a small number will suffer from the severe, life-threatening form. The HFEA says that undergoing two cycles of treatment exposes a woman to the risk of OHSS twice. This is true. But it is also true most people undergoing IVF treatment have two or more cycles and therefore expose themselves to the risk of OHSS more than once. Fertile egg donors (just like organ donors) also expose themselves to this risk, in this instance with no benefit to themselves, other than the satisfaction of helping another woman. Gillott is right when he says that this approach to policy making, in which small risks are highlighted in order to mount an ethical argument against a particular procedure, "undermines the intellectual coherence of regulation." It could also frighten the very people regulation is designed to protect. Focussing upon the risks of ovarian hyperstimulation in order to argue against egg giving is likely to scare all IVF patients and egg donors. It also risks alienating practitioners, who resent being made to feel like they are offering risky procedures to patients. One of the drawbacks of having a regulatory agency with policy-making powers outside of the democratic process is that when it makes decisions which are based upon flawed logic, there is very little that can be done to challenge them. JULIET TIZZARD London, UK The author is the director of the Progress Educational Trust |
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