Recently, a new angle to the many and varied debates over predictive genetic testing has emerged. A number of clinical geneticists in the UK have been requested to undertake genetic tests on children who are up for adoption. When advised that these tests were not in the interests of the children concerned, several local authorities obtained court orders enforcing the tests.
It is usual for children who are being considered for adoption to be assessed by health and social work professionals. This is to ascertain their developmental progress and current medical status, and to identify future needs. Medical information is also sought from the biological parents of the children. If these investigations suggest a risk of inherited conditions, local authorities and/or prospective parents may wish to verify whether a child carries a specific gene.
Could this information result in a decision not to proceed with the adoption? It may seem disturbing that a person would reject a child on the basis of a genetic test. Discussing the issue on BBC Radio 4's Inside the Ethics Committee programme last year, ethicist Deborah Bowman argued that parents who would reject on these grounds are in effect 'commodifying' that child - something she regards as being clearly unethical. Deciding not to adopt a child with a particular genetic condition undoubtedly indicates a conditional attitude towards becoming a parent.
But do we really expect adoptive parents to approach parenthood unconditionally? The extensive medical examinations that are already a part of the adoption process give parents the chance of drawing back if the child has needs they cannot meet. Genetic testing is an extension of this. In fact, conditional attitudes towards parenthood are widely accepted and even expected. Women who terminate pregnancies on the basis of the results of prenatal diagnosis, or who use PGD to select embryos, wish to have a child only if it is free of a specific medical condition. An entirely unconditional approach to parenthood may be the ideal, but it is not the norm. It would seem harsh to judge adoptive parents by such an exacting standard.
In the case of adoption, the interests of the child must also be considered. For some conditions that manifest themselves early in childhood, there may be strong arguments in favour of testing, especially if this means that swift intervention could improve long-term health outcomes for the child. In such cases, regardless of the adoption situation, it might be regarded as being in a child's interests to undergo tests. (Testing is minimally invasive and carries virtually no risk in itself.)
The cases that have caused controversy are those where the disease is of later onset, meaning that there is no immediate medical benefit for the child, and in fact, testing may actually be harmful. The knowledge that one will develop a condition such as Huntington's disease, for example, may be a heavy psychological burden. Adults at risk of developing the disease often decide not to undergo testing. Testing children deprives them of this putative 'right not to know'. For these reasons, testing young children for late onset diseases is generally viewed as being inappropriate.
But perhaps the peculiar circumstances of adoption justify going against this commonly accepted view. Where children being brought up by their biological parents are at risk of genetic disease, a parent may be aware of something 'running in the family'. This lay knowledge is highly significant: it gives parents something to go on, and can help families to cope with risk. Parents are likely to have seen the effects of the disease on the sufferer, and those around him/her. Adoptive parents who lack this kind of experiential knowledge may feel that genetic testing could provide clear information that would relieve their uncertainty.
Yet genetic tests do not always fulfil expectations. Clinical geneticist Anneke Lucassen notes that people often assume that results will be conclusive, and can be followed up with an immediate intervention. As mentioned above, this is rarely the case. In Lucassen's experience, if parents are invited to discuss their expectations, and are made aware of the limitations of predictive testing, they generally opt to defer testing.
In the context of adoption it may be difficult to enter into this kind of discussion. But local authorities need to engage effectively with geneticists when such questions arise. And with the demand for genetic testing increasing, these issues are likely to arise more frequently in future. There may be occasions when there are compelling reasons for predictive testing, but these need to be discussed openly in the first instance rather than being pursued through the heavy-handed means of obtaining a court order.
Acknowledgements: Thanks to Anneke Lucassen and Barbara Jennings for their advice and comments.
Sources and References
1) Andorno R, 'The right not to know: an autonomy based approach' (2004)
2) Inside the Ethics Committee: Genetic Testing and Adoption BBC Radio 4
3) McAllister M, 'Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing' (2003)
5) Quaid K and Morris M, Reluctance to undergo predictive testing: The case of Huntington Disease (2005)