As a member of the Clinical Ethics and Law unit in the Faculty of Medicine, University of Southampton, I recently took part in a research project looking at the genetic testing of children for adult-onset conditions, funded by the BUPA Foundation medical charity. My specific focus was on how such testing might be used in the adoption setting, and particularly, the views and opinions of the professionals involved.
My study focused on predictive genetic tests, that is tests that predict adult-onset conditions such as Hunting ton's disease, rather than genetic tests as part of a current diagnosis or management of the child now.
The issue of predictive genetic testing in childhood has been much debated, and a range of guidelines exists to help inform practitioners about appropriate practice in this area. BAAF's (2006) guidelines recommended that this type of testing 'should never be undertaken to make a child more adoptable'. Four years later, the British Society of Human Genetics (BSHG) revised their earlier (1994) guidance (Lucassen et al, 2010a) and urged a cautious approach towards predictive genetic tests for children where no useful medical interventions would be implemented as a result. Despite these guidelines, requests to test children in order to gather information about genetic inheritance for prospective adopters continue to be made (Hill et al, 2010). My study sought to explore the ethical issues raised by this practice, and to look at professional awareness of existing guidance.
I interviewed 17 professionals connected with adoption, including social workers, medical advisers, adoption managers and healthcare professionals. I am grateful for their enthusiastic participation. Through these in-depth interviews I came to understand the complexities surrounding looked after children. Although my study was by no means quantitative, it is noteworthy that all my interviewees had heard about cases where a predictive genetic test had been considered as part of the adoption decision, and ten had personal experience of one or more cases.
'They're more vulnerable to removal of autonomy'
Both the BAAF and BSHG guidelines emphasise that the key consequence of testing in childhood is that a child's future autonomy, or their future ability to choose whether or not to be tested, is removed. Evidence from predictive genetic testing in adulthood suggests that such a choice is worth preserving: only a minority of adults who are at risk of having the faulty gene for Huntington's disease choose to be tested, suggesting that removing this choice--by testing before...