26 July 2008
Defending the Genetic Supermarket: Law and Ethics of Selecting the Next Generation
Published by Routledge-Cavendish
ISBN-10: 1844720586, ISBN-13: 978-1844720583
Buy this book from Amazon UK
The philosopher Robert Nozick introduced the idea of a genetic supermarket in 1974, before the first IVF birth and the era of medical genetics. At the genetic supermarket, he imagined, prospective parents could shop for desired traits, and design a child to their particular specifications. In 'Defending the Genetic Supermarket', Colin Gavaghan explores the ethics underlying the use of assisted reproductive technologies, in particular preimplantation genetic diagnosis (PGD), as well as the current regulatory framework governing their use in the UK. He argues that, contrary to the precautionary principle adopted by parliament and the Human Fertilisation and Embryology Authority (HFEA), a pro-choice approach favouring the reproductive freedom and autonomy of individuals is the most ethical means of regulation. He advocates a reversal of the current situation in which parents are required to prove a medical need for PGD, to a system where the state is required to justify any restrictions to reproductive choice, and parents are permitted to screen for any genetic trait. He considers the implications of this reproductive freedom in the context of screening for disability, sex selection, and the creation of 'saviour siblings'. Gavaghan also examines recent decisions from the HFEA and parliament with regards to PGD, and exposes the regulation as being inconsistent, subjective, ethically flawed and sometimes in disagreement with current scientific evidence. Nozick himself argued against centralised regulation, and suggested that decisions about what sort of future people there should be are better left to the consumers at the genetic supermarket. In Defending the Genetic Supermarket, Gavaghan also argues that 'it is incumbent on us to show good reason before we interfere with the pro-choice assumption', and that decisions concerning reproductive freedom are 'better entrusted to prospective parents than to the state'.
PGD involves testing embryos prior to implantation into the womb, as part of IVF treatment. A single cell is removed from the embryo for biopsy, and its DNA is tested for a known hereditary disease. Of the available embryos, parents may then select to implant an embryo that is free from the genetic disorder. Current UK legislation allows the use of PGD to test embryos to avoid certain single gene disorders, chromosomal disorders and for sex selection to avoid sex-linked disorders. Gavaghan notes the distinction between PGD, which involves choosing from existing embryos, and the hypothetical 'designer baby', which would involve engineering embryos by introducing desired genes - a technology that is not currently available, and is illegal under UK legislation.
Throughout the book, Gavaghan asks the questions: what obligations do we owe our future generations? Will anyone be harmed, or have their rights infringed, as a consequence of PGD? Derek Parfit's Non-Identity problem is central to his answer, which describes the paradox that a person cannot be harmed by an act that brings about their existence, because the only other option for that particular person is to not have existed at all. Gavaghan illustrates this in the case of Sharon Duchesneau and Candy McCullough, a lesbian couple who chose to have a deaf baby through donor insemination from a deaf sperm donor. We might at first think that their son, Gauvin, has been harmed by his parents' choice for him to be born deaf. However, Gavaghan points out that, had his parents elected to create a hearing child, a different person would have been born, and Gauvin would not have existed at all. For Gauvin, deafness and existence are inseparable. While Gavaghan - and Parfit himself - acknowledge that the answer to the Non-Identity Problem may seem counterintuitive and unsatisfying in certain cases, Gavaghan reasons that the reproductive choices of parents cannot constitute harm to the future child, and therefore should not be restricted by law. Only a life so dreadful that it is worse that not existing at all would constitute aharm, Gavaghan claims, and in these rare cases parents would be restricted by law from creating a child with a severe genetic disability.
If children born from PGD cannot be said to be harmed by it, what of already existing people? Some claim that allowing PGD to 'screen out' genetic disabilities, or to select the sex of an embryo, devalues and makes existing people with disability feel unwanted by society, by implying that it would be better if they did not exist. These are legitimate concerns, Gavaghan says, because their existence is not dependent on PGD, but they might be said to be harmed by it. Gavaghan suggests, however, that the current regulation surrounding PGD, allowing genetic testing for only certain, sufficiently serious, genetic illnesses, only exacerbates this discrimination. If reproductive freedom is allowed to parents, then it cannot be said that the state, or society, is making value judgements on what kind of lives are worth preventing. These choices are left to individual families. Indeed as we see from the previous example, some parents might also choose to select for certain genetic traits that other people may regard as disabilities.
In the case of the use of PGD for the creation of 'saviour siblings', Gavaghan analyses the decisions of the HFEA, parliament and the courts in two cases of the Hashmis, who had an existing child affected by beta thalassemia, an inherited condition; and the Whitakers, who had a son affected by Diamond Blackfan anaemia, for which there was not a genetic test available. The families sought to select an embryo through PGD that was a donor tissue match to their existing child, so that they could collect the umbilical cord blood from the birth of the future child - which is rich in stem cells - for use as a treatment for their existing child.
Gavaghan describes how in 2001, the HFEA Ethics committee considered the case of the Hashmis and the Whitakers. Balancing the life and medical needs of the existing child, the rights of the future sibling, and the reproductive freedom of the parents, the committee recommended allowing PGD under both circumstances. However in 2002, the HFEA acted against these recommendations, on the grounds of psychological burden to the future child, for which they provided no evidence, and in 2004 reversed this decision on the basis of improved safety of PGD techniques, about which no new evidence had emerged since 2002, Gavaghan notes. Furthermore, the parliamentary Science and Technology Select committee claimed that the HFEA made this decision outside of its remit - as outlined in the 1990 Human Fertilisation and Embryology Act - and should have consulted parliament and the public on the matter. A similar legal challenge on the grounds that the HFEA acted outside its powers as an unelected body was also brought forward by Josephine Quintavalle and the lobby group Comment on Reproductive Ethics. Gavaghan argues that legislative and legal decisions behind these cases reveal a confusion within the HFEA, parliament and the courts, and weaknesses in the ethics and science behind their decisions. It also highlights the question: in which of these arenas should the regulation of the use of emerging reproductive technologies be decided? Gavaghan criticises all parties for not taking sufficient account of the suffering of the existing children, prolonging their suffering while they debate the possible unknown risks to the future child. In the case of the Whitakers, the family did not wait for a court decision, and instead sought fertility treatment in America. Umbilical cord stem cells from the birth of their son Jamie were successfully used in a bone marrow transplant for Charlie.
Gavaghan also examines the Kantian concern that the child would be used as a means rather than an end, and suggests that all parents have a variety of reasons for starting a family or having children that are not solely in the interest of the future child, and their reproductive freedom should not be curtailed in the case of assisted reproductive technologies. He reiterates that no harm can be done to the future child in choosing to create it through PGD, if we agree with the Non-Identity Problem. Furthermore, he reminds us that the argument over saviour siblings is about the conception of the child only. Once the child is born, he is protected under the Human Rights Act, as is every person, and cannot be coerced to act against his will by harvesting his tissue or bone marrow.
Finally, Gavaghan considers the future of PGD and the implications of its widespread use on society. Because the impact of PGD will be generational, the slow changes to society that may occur can be easily reversed in the future, and for this reason he argues for reproductive freedom in the absence of any evidence of health risks. Even with total reproductive freedom, he suggests that PGD will at best offer a limited advantage over naturally conceived children for any chosen trait, because the technology involves selecting from what is already present in the parents' genomes.
However, in imagining a future where PGD is widespread, Gavaghan sometimes fails to emphasise the invasive procedures and hormone treatment that IVF cycles and embryo implantation involve for women. Even if IVF pregnancy success rates improve and the cost of treatment is reduced, is it realistic that a significant number of women with access to the technology will forego natural conception in favour of PGD, to confer a small competitive advantage to their children? Furthermore, the competitive advantages that we might want to pass onto our children - intelligence, good physical and mental health, etc - almost certainly involve the complex interaction of several genes with each other as well as with environmental influences, and it is questionable whether it will ever be possible to test for these desirable traits in the same manner as for single gene disorders. The real difficulty, he acknowledges, lies in assuring fair and equal access to the technology, given its great expense, though he offers no solutions to this problem. While the wealthy might benefit more from the technology, he argues that other approaches to tackling social inequality would be more productive than restricting the use of PGD on these grounds.
Overall, the book provides a clear argument in defense of the Genetic Supermarket and the reproductive liberty of its customers. It is an informative and thoughtful approach to the question of legislation surrounding reproductive choices. While it may be normal to be hesitant and precautionary in the face of new technology, Gavaghan convincingly challenges the 'gut feelings' that pervade this debate, examining the consequences of PGD from a philosophical, medical and legal perspective. In an afterword, Gavaghan concludes with the caveat that the creation of embryos through modification of the human genome - the creation of 'designer babies' - raises new ethical and scientific questions that have not been addressed in the book, which may warrant a more precautionary approach to legislation in the future.
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