Taking account of parental views: Pre-implantation Genetic Diagnosis
Research from Professor Rosamund Scott in the Centre of Medical Law and Ethics in The Dickson Poon School of Law has influenced the Human Fertilisation and Embryology Authority (HFEA) Code of Practice.
IVF babies make up around 2% of all UK births. In the last 20 years pre-implantation genetic testing has allowed prospective parents to test IVF embryos for a range of serious genetic conditions.
It is legal in the UK to test embryos, by pre-implantation genetic diagnosis (PGD), where there is a ‘significant risk’ of a ‘serious genetic condition’ in the future child.
The Human Fertilisation and Embryology Authority (HFEA) - the UK's independent regulator overseeing the use of gametes and embryos in fertility treatment and research - took account of recommendations resulting from Professor Scott’s and her collaborators’[1] research when revising its Code of Practice.
Professor Scott says, “our research has shown that defining the ‘seriousness’ of a condition that is the subject of PGD testing is controversial and cannot be understood as a purely medical or objective matter. The decision to seek PGD is a deeply personal one that is likely to be the result of direct and painful relevant experience.”
“We argued, via a consultation response, that it is crucial, and ethically justifiable, to continue to recognise this in the regulatory framework at a point when the HFEA was considering changes to key sections of its Code of Practice to contrary effect.”
The HFEA decided not to make its planned changes to the Code and continues to allow for the consideration of parental views with regard to the “seriousness” of the genetic diagnosis. ‘This does not mean we have to accept parental views and reasons at face value”, says Professor Scott. “What it does mean is recognising that parents may be seriously affected by the condition of the child that is born. ‘Serious’ can therefore also mean ‘serious for the parents and their family’.”
[1] Professor Bobbie Farsides, Brighton and Sussex Medical Schools; Professor Clare Williams, Brunel University; Dr Kathryn Ehrich, formerly Centre of Biomedicine and Society, School of Social Science and Public Policy, King's College London. This research project, ‘Facilitating Choice, Framing choice: the Experience of Staff Working in PGD’, was supported by the Wellcome Trust Biomedical Ethics Programme (Grant Number 074935, PI Professor Clare Williams, January 2005–June 2007).