Paper short abstract:

UK clinical/scientific staff views on social, clinical and ethical dilemmas regarding genetic technologies for foetal testing vs. preimplantation diagnosis, eg termination of pregnancy vs. discarding embryos after diagnosis of abnormality; conceptions of humanness, life and death.

Paper long abstract:

In the UK, the Human Fertilisation and Embryology Authority (HFEA) is responsible for licensing preimplantation genetic diagnosis (PGD). To date licences have been issued for the testing of about fifty genetic conditions. One of the ethical principles used by the HFEA in approving licences is that indications for the use of PGD should be consistent with, although not necessarily the same as, current practice in the use of prenatal diagnosis (PND). However, the ways in which people understand, value, negotiate and use genetic technologies in relation to PND differ from those in relation to preimplantation testing of embryos.

This paper reports on one aspect of a study exploring the views and experiences of practitioners and scientists on social, ethical and clinical dilemmas encountered when working in the area of PGD for serious genetic disorders. The study is producing an ethnography based on observation, interviews and ethics discussion groups with staff from two PGD/IVF Units in the UK. In this paper we focus on staff perceptions and experiences of working with embryos and helping women/couples to make choices that will result in selecting embryos for transfer and discarding 'affected' embryos, compared to their views about decisions made after PND to terminate affected pregnancies. For example, some staff have expressed their discomfort with the termination of pregnancies following PND, whereas they describe three day old embryos as 'a ball of cells'; whilst others view embryos as a form of life and regard the process of allowing those not selected for transfer to perish as undergoing a form of death.

The findings have implications for wider debates about how new genetic developments and technologies, and related clinical and social practices, match with changes in conceptions of humanness, what it means to be alive, and death.

Acknowledgements: This research is funded by The Wellcome Trust Biomedical Ethics Programme (Grant No: 074935)

By: Kathryn Ehrich, Clare Williams, Peter Braude, Bobbie Farsides, Jane Sandall, Rosamund Scott.