| Designer Babies |
| Sunday, 08 May 2005 | |
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Should we be allowed to select embryos according to their genes? Edwina Casebow discusses both sides of the debate The heated ‘designer babies’ debate has been re-ignited. This follows the Human Fertilisation and Embryology Authority’s (the HFEA’s) policy extension on 21st July 2004 concerning the tissue typing of embryos. Their ruling allows couples to test the genetic make up of embryos, and consequently select one as a match for a seriously ill brother or sister. After birth, this ‘matched’ baby would be able to provide a bone marrow transplant for the ill sibling in order to treat some rare, potentially fatal, genetic disorders of blood cells, such as Diamond Blackfan anaemia and Fanconi anaemia.
Playing devil’s advocate, in this article we impartially examine the debate and present the arguments for and against the HFEA’s new ruling. The Motion ForThe life of a dying child can potentially be saved if couples are allowed to select an embryo that could provide a bone marrow transplant for the ill infant. According to Suzi Leather, the HFEA’s chairwoman, “faced with potential requests from parents who want to save a sick child, the emotional focus is understandably on the child who is ill.” But this is not to say that tissue testing won’t be subject to careful scrutiny and regulation by the HFEA. Applications will still be considered on a rigorous case-bycase basis, requiring both a consultant’s referral detailing why other treatment has failed and a second opinion. Although the ethical argument against allowing embryo selection for this purpose is mainly based on the idea that the child of the sick sibling should not be a ‘means to an end’, some people have challenged this view, asking why a conflict of interest between saving the life of one child and wanting another should exist? Indeed, the new ruling will mean that applications for tissue testing won’t be turned down for this reason. When this has happened in the past, most notably in the case of Charlie Whitaker’s parents in 2002, it created uproar in the popular press for perceived discrepancies between the handling of different cases. Charlie suffered from Diamond Blackfan anaemia, a condition for which no embryological genetic test exists. However, earlier in the same year, the HFEA had granted permission for tissue typing and embryo selection to the parents of Zain Hashmi, a boy with thalassaemia, another type of rare genetic blood disease. Although this permission was granted because a genetic test exists for Zain’s condition (meaning that, unlike Charlie’s parents, the Hashmis could combine screening embryos for thalassaemia with tissue typing, in line with the HFEA’s 2001 ruling), the apparent disparity in the HFEA’s decisions was still widely condemned. According to Suzi Leather, selecting an embryo with the potential to save the life of its sibling can “benefit the whole family” too. When the psychological impact on the child created to save its sibling has been considered, it has usually been assumed to be a negative one. This is, however, debatable: it is unlikely that a child would be any less loved, or valued for his or herself, than any other. On the contrary, both the tissue-matched child and his or her ill sibling would clearly be very much wanted by his or her parents, much more so than the many unplanned or unwanted children born in Britain each year. A crucial factor in the HFEA’s decision to extend its policy was whether or not the invasive tissue test caused any physical harm to embryos. Suzi Leather reports that its review of the available evidence “does not indicate that the embryo biopsy procedure disadvantages resulting babies compared to other IVF (in vitro fertilisation) babies”. In other words, the medical technology to select embryos according to their genetic make up is available to couples undergoing IVF at no increased risk to the future foetus. The Motion AgainstIn the eighteenth century, the philosopher Immanuel Kant proposed that every individual should be treated as an ‘end’, not merely as a ‘means to an end’. His theory forms the basis of much of our ethical thinking today, and can be applied to argue that embryos should not be selected in the manner that the HFEA’s recent policy change allows. This is because a future child would not be valued for his or herself in their own right, but only in the context of being a potential lifesaver for an ill sibling. Consequently, pressure groups such as Human Genetics Alert and Pro- Life Alliance , express concern that children are becoming objectified and viewed as a commodity, not as equals of their parents.
Furthermore, according to the Pro- Life Alliance , embryo selection could be a “slippery slope to designer babies”. Other people also worry where the HFEA’s increased permissibility will take us in the future: what happens if a first cousin, or even a parent, requires a transplant? If such cases are subsequently allowed, would it only be a matter of time before children are selected on the basis of sex to ‘balance a family’, or for particular physical characteristics? The Pro-Life Alliance opposes any form of embryo selection and IVF because of the waste of fertilised embryos that such procedures involve. “Every method involves loss of life”, they say. As a result, the ‘murder’ of many embryos – all considered potential babies – cannot justify the birth of one child. Indeed, the ethical and theological arguments surrounding IVF and embryo selection warrant a separate debate in themselves. There also remain some concerns about the practicalities of the test itself. Although HFEA’s review of current evidence concluded that it does not physically harm embryos any more than the procedure of IVF itself, some new scientific technologies and pharmaceutical agents initially thought to be safe in the past were subsequently proved otherwise. Who knows what we may discover about tissue testing techniques in the future? In SummaryThe HFEA’s recent policy extension on tissue typing allows parents to select embryos in order to act as donors for sick siblings. As a result, couples can now have a child specifically to save the life of an ill brother or sister. This therapeutic benefit is directly opposed by adherers of the Kantian argument against treating children as a ‘means to an end’ rather than an ‘end’ in themselves, and by those objecting to the destruction of human embryos for theological or other reasons. There can be no ‘right’ answer to this debate. Only one thing is sure: as the scientific advances in reprogenetic technologies continues, the number of ethical and moral dilemmas can only increase. Edwina Casebow is a fifth year medical student with an MPhil in History and Philosophy of Science. |
The decision comes after a review of both the physical
effects of the embryo tissue test (a process which involves taking a
cell sample from an embryo eight cells in size), and the psychological
and emotional implications on ‘matched’ children and their families. It
replaces the HFEA’s legislation from 2001, which permitted selection
only in cases where embryos were being tested for serious inherited
genetic disorders at the same time. 
One
of the main considerations that the HFEA has reviewed since 2001 is the
potential negative psychological effect of being a so-called saviour
sibling. Despite the authority’s conclusion that such tissue matching
and transplant treatment can “benefit the whole family”, scientific
advances are so new that it is difficult to assess the long term
effects properly. There are major worries that tissue-matched children
may have psychological problems and difficulties integrating within
their families if they believe that they are not valued in their own
right as individuals. News Archives
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