Facilitating Choice, Framing Choice: Staff Views on Widening the Scope of Preimplantation Genetic Diagnosis in the UK

In the UK, the Human Fertilisation and Embryology Authority (HFEA) is responsible for licensing preimplantation genetic diagnosis (PGD). To date, licenses have been issued for the testing of about 70 genetic conditions, drawing on three key ‘ethical principles’. Following a public consultation, the HFEA has recently widened the scope for PGD to include susceptibility to late onset, lower penetrance conditions such as inherited breast cancer. As the numbers and types of conditions which can potentially be tested for rises, the question of how, and indeed what limits should be set is timely. Drawing on qualitative interviews and ethics discussion groups which took place prior to or during the HFEA consultation, this paper explores the views of staff working in or linked to one PGD Unit in the UK, as to how they saw these potential changes. The paper thus provides an opportunity to develop greater understanding of how staff working in a morally contentious, innovative area viewed the potential expansion of their work, prior to that expansion taking place. Key themes include ‘drawing lines’ on behalf of others, particularly with the current emphasis on individual reproductive autonomy; and balancing the invasiveness and possible risks of PGD treatment against the ‘seriousness’ of the condition. More broadly, the paper highlights the complexities involved in trying to develop general ‘ethical principles’ to govern the use of ever evolving reproductive technologies.