Preimplantation Genetic Diagnosis: From Clinic to Eugenic Fears and Disability Concerns

Abstract

Preimplantation genetic diagnosis (PGD) is an assisted reproductive technology introduced to detect embryos with genes associated with certain genetically-based diseases. The rationale for this procedure that has been carried out for over 20 years is to bring about the birth of children not affected by the genetic condition in question. The inevitable selection of one embryo over another has constituted the crux of the main opposition to PGD over the years, especially among those for whom all embryos have a moral value equivalent to that of fully developed humans. However, with time this core ethical dilemma has been joined by others, characterised in particular by fears about the eugenic nature of PGD, and concerns that its use devalues people with disabilities.

The practical issues that are most relevant emerge in connection with Huntington’s disease testing, HLA-typing and preimplantation genetic screening (PGS). In order to look in some detail at the major issues in these areas, considerable attention is paid to the current state of the scientific base of PGD, and the dominant issues that arise in the clinic. In considering general ethical issues, there is discussion around principles such as autonomy, non-maleficence and truthfulness.

In terms of eugenic fears, the controversy surrounds the concern that PGD is a reincarnation of the eugenics of the early 20th century, which culminated in the horrors of the Holocaust. This worry is evaluated for its legitimacy, and then reanalysed in the context of Agar’s definition of liberal eugenics. Overall, the fears about eugenics are shown to be unfounded, due to the current lack of class bias, lack of coercion and the well-grounded science upon which the procedure is based.

The final issue analysed is what is termed the ‘expressivist objection’. This describes arguments that claim that the way PGD is practised causes harm to the disability community. This view emerges from the social model of disability, which stands in opposition to the prevalent medical model.

In drawing together these various strands, I conclude that the potential harms expressed are not sufficiently serious to outweigh the advantages that PGD brings. It is concluded that PGD is currently practised in a responsible and measured way that effectively balances potential dangers with the immense benefits that can be achieved. On the other hand, major changes in the reasons for undertaking PGD in the future may substantially alter the ethical horizon.