LAST month, the UK鈥檚 fertility treatment and embryo research regulator made what appeared to be a radical decision. The Human Fertilisation and Embryology Authority (HFEA) said it would consider allowing prospective parents to test embryos created outside the body for serious genetic disorders such as aggressive breast, ovarian and bowel cancers before deciding whether to implant them. It was seen as radical because up to then the HFEA had allowed pre-implantation genetic diagnosis (PGD) only for conditions that result in certain death or severe disability early in life, such as cystic fybrosis or Huntington鈥檚 disease. People carrying genes that predispose them to breast, ovarian or bowel cancers may not develop the disease until much later in life 鈥� if at all.
In announcing the change, Suzi Leather, chair of the HFEA, said: 鈥淲e would not consider mild conditions, like asthma and eczema, which can be well managed in medical practice.鈥� My question to her is: why not? The HFEA鈥檚 decision is not nearly radical enough. Rather than worry about whether allowing screening for these cancers is a step onto some slippery slope to 鈥渄esigner babies鈥�, we should ask why the authority doesn鈥檛 allow prospective mothers to gather any information they can, via genetic tests, on conditions that may affect their babies, including things like asthma and depression and even conditions with a low probability of affecting the embryo.
Before you accuse me of being deliberately provocative, let me explain my logic. The ways in which the HFEA interprets its statutory responsibilities flout two of the basic principles of medical ethics. The first is informed consent, the idea that citizens should have the power to consent to or refuse any medical treatment offered them in full knowledge of all relevant facts. The second is patient autonomy, the principle that patients should be in control of their treatment and their lives.
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To understand why these principles are being ignored, consider a case in which a woman has had IVF and has six embryos awaiting implantation. PGD has revealed that three have various genetic disorders and three seem healthy. If she is in England, she may now usually only implant up to two. But which should she implant?
There are two key points here. The woman is under no moral nor legal obligation to implant any of the embryos, and the decision to implant some or none is entirely her own. It is also important to spell out that no embryo has a right or an entitlement to be chosen over another. An embryo is not a person, nor yet a moral agent. Crucially, no embryo has any legal right to even the chance of existence.
This means that the mother鈥檚 choice is relatively free. She has moral reasons to do what she can to ensure that the child she bears is as good an individual as she can make it, so she should be able to choose any advantageous trait. She should also be able to choose any neutral trait too, such as gender: if it is not wrong to wish for a bonny bouncing brown-eyed baby girl, how does it become wrong, if we have the technology, to play fairy godmother to ourselves and grant our own wishes? In short, a woman should be allowed access to any test of proven efficacy. Yet the information on which she might make a choice is in effect rationed by the HFEA.
鈥淎n embryo is not a person, and has no legal right to even the chance of existence鈥�
Why does the authority fear giving women access to this kind of information? It stems mainly from misconceived ideas about the rights, status and interests of embryos. My parents were under no obligation to attempt to conceive in any particular month. If they had conceived in any month but one, 鈥淚鈥� would not have existed. I had many possible siblings who were never born and who were irrevocably harmed by this choice, but not only are they not complaining, I can assure you that had my parents chosen a different month you would not have heard me complain. Likewise, if IVF and PGD had been available when I was conceived and my parents had chosen an embryo without my genetic disadvantages, would I have had any ground for complaint?
It is a fallacy to think that such choices constitute unfair discrimination: there are no victims, no rights are violated nor interests compromised. Nor do they reflect badly on people with disabilities since they apply in the same way to possible enhancements. Suppose we could give embryos genes that conferred complete immunity to many major diseases. We would surely prefer to implant such embryos given the choice. But this would not imply that 鈥渘ormal鈥� embryos had lives that were not worth living.
There are moral reasons to take any opportunity to create healthier individuals. If people seek to make such ethical choices about their future children, they are surely entitled not to be impeded by laws or regulations that would stand in their way.
