Author:

Keywords:

Hoger Instituut voor Gezinswetenschappen, Science & Technology, Life Sciences & Biomedicine, Obstetrics & Gynecology, Reproductive Biology, 11 Medical and Health Sciences, 16 Studies in Human Society, Obstetrics & Reproductive Medicine, 3215 Reproductive medicine

Abstract:

Introduction: Preimplantation genetic diagnosis for HLA-typing (PGD/HLA) is a method using IVF for conceiving a tissue matched child that can serve as a haematopoietic stem cell donor (saviourbaby) to save its sick sibling in need of a stem cell transplant. Since PGD and PGD/HLA raises a lot of ethical questions and is even forbidden by law in some countries, families asking for this procedure are psychologically and ethically screened at the intake. Couples wishing a ‘saviourbaby’ are only allowed when the newborn is not only a mere ‘instrument’ to save a sick sibling but a child wished and loved for him or herself. This is conform the Belgian law. Material and Methods: At the intake of the PGD/HLA procedure in UZ-Brussels the couples are interviewed by an ethicist-psychologist as part of a research project. This qualitative research, using semi-structured, in-depth interviews fully transcribed and analysed, aims at getting more insight in the attitudes, values, arguments and motives which play a role in the decision process for opting or not opting for PGD/HLA. In this presentation we analyse the data of 28 intake-interviews, taken between april 2008 and december 2010. We focus on two issues (which might indicate a degree of instrumentalization of the saviourbaby) of this interview: A. Would the couple wish a new baby when their sick child wasn’t in need of the saviour baby’s stem cells? B. The answer of the couples to a pure hypothetical scenario: Being pregnant after using the PGD/HLA procedure, couples can opt for a amniocentesis or chorionic villus sampling to check the embryo. Surprisingly the tests conclude that although the embryo is not having the genetic disease of the sick child, the embryo is not a good HLA-match and will not be able to save the sick sibling. Will the couple abort this embryo and start over the PGD/HLA-procedure to become pregnant of a healthy, HLA-matched embryo? Or will the couple keep this pregnancy and welcome the birth of the non-HLA-matched embryo? Results: On issue A, we distinguish 3 categories of answers. 10 out of 28 couples clearly state that they always have wanted more children, that their child wish isn’t yet complete, and that their child wish for a new child is independent of the sickness of their existing child. 10 other couples always wanted more children but postponed their child wish because they had to take care of their sick child. PGD/HLA can give them reassurance that the new baby will not have the same disease as the sick child. 8 out of 28 couples say that their child wish was complete but that the disease of their child and the ‘bonus’ of a ‘saviour’-baby changed their wish for a new child. They state that the new child will be respected and loved for him/herself. On issue B, only 6 out of 28 couples think they’ll choose for an abortion in the hypothetical situation. An important reason is time pressure to save their sick child. 22 of the 28 couples say they would undoubtedly be happy with the pregnancy of a healthy child. Conclusions: A. The possibility of using PGD/HLA makes 18 out of 28 couples renew their wish for a child. 10 of them embark for a new baby since PGD can help them to have a healthy child. In 8 of the 28 couples, the longing for a new child arises from the wish to help their sick child. B. In balancing a new, healthy baby against a chance of a life-saving treatment for their sick child, 22 out of 28 couples would choose a new healthy baby.