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Fertilisation rights and wrongs
Pictured is Tom Shakespeare.
Tom Shakespeare, disabled parent, sociologist and bioethicist, is a research fellow at Newcastle University, UK. He has written widely on disability issues and is the author of Disability rights and wrongs (Routledge, 2006). Here, he discusses the ethical debate surrounding the 2008 UK Human Fertilisation and Embryology Act.
Embryo selection
The 2008 Human Fertilisation and Embryology Act has now come into law. This follows two years of parliamentary debate and amendment, and considerable public interest. At one stage, anti-abortion campaigners, with the support of some disabled peers, tried unsuccessfully to limit late abortion on the grounds of disability. The final Act covers many areas of fertility services and research, taking account of changes in social values and technological possibility since the original 1990 Act.
The clauses with most relevance to disabled people are the amendments to section 13 of the 1990 Human Fertilisation and Embryology Act adding new subclauses specifying that persons or embryos who are known to have a gene, chromosome or mitochondrion abnormality leading to risk of a serious physical or mental disability, illness or other condition must not be preferred to persons or embryos free of such conditions.
In other words, people cannot deliberately select Deaf sperm donors, or choose Deaf babies, where they have a choice, or select for any other illness or disability using IVF or embryo selection (pre-implantation genetic diagnosis or PGD). It does not apply to people who are not using IVF services.
Many people will be offended by some of the language used, or by the perception that it is necessary to legislate to stop people deliberately creating disabled babies. After all, the number of cases where this has happened could be counted on the fingers of one hand. Moreover, the debates on the issue contained some very prejudiced descriptions of life with deafness and other conditions.
Implications
But aside from the language and message of the Act, what will be the practical impact on disabled people? To understand that, we have to consider the circumstances in which disabled people might be undergoing an IVF procedure. Infertility is not uncommon “one in seven couples has problems conceiving” so of course disabled people will be among that group. But there are also those whose impairment reduces their fertility: for example, women who undergo cancer treatment, men with spinal cord injury, women with Turner syndrome, men and women with cystic fibrosis (CF), and others. In these cases, couples will depend on donors of sperm or eggs, and/or IVF treatment.
In the majority of these cases, the parents' condition is not heritable. Recessive conditions such as cystic fibrosis do raise the chance of the pregnancy being affected by the condition of the parents: for example, if the mother/egg donor and father/sperm donor have CF, or are carriers of CF then the baby has between a one in four and a one in two chance of having the condition.
The new law does not stop someone using IVF to conceive a child, even if they take the risk of passing on a genetic condition. A couple with a high risk of having a child with genetic disease can opt for PGD. In the overwhelming majority of cases, this scenario occurs because both are carriers of a genetic condition, and wish to avoid it in their baby. In most cases, they themselves are not affected. However, it may be the case that people who are both affected with restricted growth (my own condition) or with deafness or with cystic fibrosis or with a few other conditions, may wish to use embryo selection to avoid having an affected child, and currently this choice would be supported by the fertility profession and the law. But there is no obligation on them to take this route.
The obstacle occurs if a couple wished to use the technology to have a child who shared the same condition. Most doctors, relying on the established ethical principle of ‘do no harm’ would always have resisted that wish, and the effect of the new Act would be to make it illegal.
An unusual case would arise if two parents with the dominant genetic condition achondroplasia (my diagnosis) wanted to use PGD to avoid having a baby with copies of the achondroplasia gene from both parents: a child with such a ‘double dose’ would always die soon after birth. The parents might ask the doctors to avoid any embryos which carried two copies of the gene, but then to choose from the remaining embryos randomly — in other words, they might be willing to chance having a baby like them, but unwilling to risk the lethal outcome. Because they were not favouring an affected embryo over a non-affected embryo, but leaving it to chance, my assumption is that this would remain legal, even if some doctors would regard it as unethical, or at least, unwise.
The vast majority of disabled or Deaf people wishing to create a baby do so in the traditional (and enjoyable) manner, and will not be affected by the new legislation. If they avoid the fertility services and use self-insemination, there is nothing to stop them choosing a sperm donor who is Deaf or has any other disability. And of course, in any relationship, if one or both potential parents have a heritable genetic condition, then there is between a 25% chance and a 50% chance of having an affected child. Many Deaf parents have Deaf children, just as many people with restricted growth (like me) have short children. Society may not like it, but it can do nothing about it, unless Parliament returns to the eugenic era of the early twentieth century, which seems highly unlikely, given that patient autonomy is such a valued element in contemporary medical ethics.
Complex decisions
Decisions about reproduction are complex and sometimes troubling. Some parents of disabled children can feel shame or guilt at having brought disability into the world. Other disabled people feel proud to be disabled, and untroubled about having a disabled child. Because they know what disability involves, they do not have the same anxieties as non-disabled parents. But most parents want to reduce any difficulty or avoid any suffering in their child. Many disabled people contemplating reproduction will have mixed feelings, if their condition is hereditary, and if it has caused difficulties in their own life: I certainly do myself. But these are private matters, a matter of personal ethics, beliefs and feelings. I believe it is unfortunate that Parliament has seen fit to legislate against such a rare use of IVF technologies, especially given that many other parts of the Act liberalise the law, for example in the area of lesbian motherhood, rather than leaving it to the conscience of individual doctors and prospective parents.