Complexities in reproductive choice: medical professionals' attitudes to and experiences of pre-implantation genetic diagnosis

Abstract

Studies have been made on attitudes to and experiences of women and men who have undergone pre-implantation genetic diagnosis (PGD), or who are regarded as potential users of this diagnostic method. Few studies have been conducted regarding the attitudes to and experiences of medical professionals as regards PGD. This paper reports on findings from such a qualitative study in which 18 semi-structured interviews were performed with geneticists and gynaecologists in Italy, Sweden and the UK. Interviewees emphasized, among other things, the importance of choice provision. Interviewees also told stories that indicated the many ways through which choice was feared to be hampered – or was hampered. A similar emphasis on the importance of PGD as one more alternative to choose between, for ‘high-risk’ couples, is not found in studies on the experiences, attitudes and views of potential, or actual, users of PGD.

Keywords:

• Pre-implantation genetic diagnosis (PGD)
• medical professionals
• choice
• ethics
• qualitative analysis

Notes

1 The Swedish interviews were performed in Swedish, the British interviews in English and most of the Italian ones in Italian. Some of the Italian interviewees said that they spoke English very well and that they could speak English during the interview. If so, we chose English as language for these interviews. All interviews were performed by me.

2 These areas are important and should be analyzed, as remarked by one of the reviewers. However, since these options were not discussed in the interviews, I will not to comment upon them within this study. For discussion of these uses, see Devolder (2005) and Klimanskaya et al. (2006).

3 Interviewees’ examples of actual clinical encounters highlighted different kinds of risks. Medical risks were risks of physical and/or psychological harm, as a direct consequence of a certain intervention. They may be present in women, men and future children. Epistemological risks were risks that resulted from no accurate knowledge being available, or that the information upon which couples based their choices was incorrect. Technology-derived risks were risks that resulted from inaccurate or imprecise technologies, or that the technology was inaccurately or imprecisely used (Zeiler, 2005).

4 According to Simonetta, we know that we might risk throwing away healthy embryos, and that some embryos will be destroyed through freezing procedures, but it seems as if these difficulties, in the end, become ‘too simplified, too minimized, sacrificed for the objective of having a healthy child’.

5 Though choice should be free, interviewees also discussed the genetic conditions that PGD was used for. They emphasized that they did not want to define serious or severe genetic diseases. As a general tendency, interviewees described the possibility of searching for certain severe genetic diseases in embryos, and the subsequent selective transfer and implantation of an embryo or embryos in the woman's uterus, as positive. Some interviewees described uses of PGD for what they described as less severe genetic diseases that were not lethal at an early age. Some also stated that PGD should be limited to lethal diseases, even if this was not always the case. For example, Andrew recalled a situation in which a couple wanted to use PGD for an X-linked, non-lethal genetic disease that resulted in hypospadia. The couple had two boys who had had severe hypospadia, who had each undergone five to ten operations in order to correct it. The woman, Andrew explained, wanted to use PGD in order to select a girl. He described the enthusiasm at the clinic as a reason why this couple was offered PGD for this genetic disease. In his view, ‘there was really no reason why she [the woman] had to continue having children and yet we seemed to find that that was acceptable’.

6 PGD units in Britain and Sweden are centralized, and only a few such units exist. This, interviewees explained, had consequences for what took place in the clinical encounters. Normally, when a couple wanted to use PGD, and when the medical professionals at their local hospital considered this appropriate, the professionals got in contact with the PGD unit and ensured that PGD was available for that specific condition. In practice, these structures (though important with regard to having national control over what was offered, under what circumstances, and by what means) resulted in couples needing to be very vocal, and to sound as if they were convinced that they wanted PGD, in order to be referred to PGD centres in the first place.