Dealing with treatment and transfer requests: how PGD-professionals discuss ethical challenges arising in everyday practice

Abstract

How do professionals working in pre-implantation genetic diagnosis (PGD) reflect upon their decision making with regard to ethical challenges arising in everyday practice? Two focus group discussions were held with staff of reproductive genetic clinics: one in Utrecht (The Netherlands) with PGD-professionals from Dutch PGD-centres and one in Prague (Czech Republic) with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants’ views regarding (1) treatment requests for conditions that may not fulfill traditional indications criteria for PGD, and (2) treatment and transfer requests involving welfare-of-the-child considerations. There was general support for the view that people who come for PGD will have their own good reasons to consider the condition they wish to avoid as serious. But whereas PGD-professionals in the international group tended to stress the applicants’ legal right to eventually have the treatment they want (whatever the views of the professional), participants in the Dutch group sketched a picture of shared decision-making, where professionals would go ahead with treatment in cases where they are able to understand the reasonableness of the request in the light of the couple’s reproductive history or family experience. In the international focus group there was little support for guidance stating that welfare-of-the child considerations should be taken into account. This was different in the Dutch focus group, where shared decision-making also had the role of reassuring professionals that applicants had adequately considered possible implications for the welfare of the child.

ART with PGD: risky heredity and stratified reproduction

“…She was almost suicidal because of having no hair on her entire body and she absolutely didn’t want to transmit this. This is a serious disorder, of which the hospital’s PGD committee said: ‘well, hair loss, what’s the fuss?’ And that in my view is the main problem, that the patient has a completely different perception than the professional ( Soto-Lafontaine et al, 2018: 378 ).…”

“…These examples, which have captured intense bioethical scrutiny, deal with concrete – but very rare – cases. Fewer studies are dedicated to the study of everyday uses of PGD, the reasons why women/couples who are aware that their future child is at risk of a genetic disease elect this technology, and views of the professionals who perform PGD ( Soto-Lafontaine et al, 2018: 376 ). The important work of Sarah Franklin and Celia Roberts, ‘Born and Made’, provides rare insight into the experience of couples who use PGD ( Franklin and Roberts, 2006 ).…”

Respect voor (toekomstige) personen

“…Dan gaat het om uitzonderlijke situaties waarin het niet is gelukt om embryo's te verkrijgen zonder de genetische variant die men had willen uitsluiten, en waarin de ouders geen andere kans hebben op een genetisch eigen kind dan door het toch maar plaatsen van een embryo met die ziekmakende variant. [15,42] Voor de hulpverleners zijn dat lastige verzoeken [43], waar ze volgens de eerder al genoemde beroepsnormen niet in mee zouden moeten gaan wanneer duidelijk is dat het kind een ernstig beschadigd bestaan tegemoet gaat. [13,26] Maar is dat ook het geval als het gaat om een hoogpenetrante aanleg voor een ernstige maar behandelbare late-onset aandoening?…”

Preimplantation genetic testing for more than one genetic condition: clinical and ethical considerations and dilemmas

“…In their view, such requests signalled a capricious attitude on the part of the couple, out of tune with professional efforts to help them avoid the reproductive risk for which they had PGT in the first place. However, others regarded such requests more favorably as an understandable adjustment of priorities in the light of a reassessment of what is realistically feasible (Soto Lafontaine et al, 2018). This, they said, was especially understandable in cases where no further hormone stimulation cycles were realistically possible and where, because of their fertility problem, the alternative option of natural reproduction was not available to the couple.…”

“…As these conditions have been subject to quite some discussion about whether they would qualify as acceptable indications under the 'high risk of a serious condition' standard, it is not obvious what the response should be with regard to requests for transferring 'last chance' embryos affected with one of those conditions (Dondorp and De Wert, 2019). We propose shared decisionmaking about such 'grey area' cases, in which the particular views of the applicants and the history and context of their experiences with the condition ('the story behind the request'; Soto Lafontaine et al 2018) are taken into account. The one case (couple #14) where last chance embryos affected with Peutz-Jeghers syndrome were transferred on request from a couple having cPGT-M, can perhaps be argued to fall in this middle category.…”