Annual meeting EACME 2009: Multiculturalism, Religion, and Bioethics, Date: 2009/09/10 - 2009/09/11, Location: Venice

Publication date: 2009-09-01

Author:

Rigo, Adelheid

Abstract:

Introduction Preimplantation genetic diagnosis for HLA-typing (PGD/HLA) is a method using in vitro fertilisation (IVF) for conceiving a tissue matched child that can serve as a haematopoietic stem cell donor to save its sick sibling in need of a stem cell transplant. Allogenic haematopoietic stem cell (HSC) transplantation represents the only curative treatment for children affected by Fanconi anaemia, ß-thalassaemia, sickle cell anemia and other similar life-treatening disorders. Using stem cells of HLA matched-sibling donor gives much better chances for survival after transplantation then using the stem cells of an unrelated matched donor. The parents coming to the Centre for Human Genetics in the University Hospital of the Free University of Brussels asking for PGD/HLA often motivate their request as 'trying everything to save their sick child in need of a transplant'. Since PGD and PGD/HLA raises a lot of ethical questions (for instance: the use of 'excess' embryos and thereby the status of the embryo) and is even forbidden by law in some countries, families asking for this procedure are psychologically and ethically screened at the intake. Parents 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 the parents 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. Between june 2007 and februari 2009 we interviewed 22 couples: 11 couples originating from Africa, 3 couples from Belgium, 2 from Germany, 1 couple from Afganistan, Bangladesh, France, Palestina, Roemania, and Spain. Several questions probe at the attitudes and experiences of the couple concerning abortion. The couples are also explicitly asked if their attitude concerning abortion has any relation with their religion or world view. Furthermore the parents are asked for their decision for the disposition of incompatible 'healthy' embryos: freezing them for later implantation (for having another healthy child), for (stem cell) research or destroying the embryos. Recent research (De Lacey, 2007) connects the parents psychological experiences of their embryo to the the morally relevant status of the embryo in practice: parents who perceive their embryo having a childlike persona is associated, paradoxically, with solutions that result in the destruction of the embryo. Results Only a minority of the couples we interviewed states that religion influences their attitudes and values towards aborton and PGD, PGD/HLA. The majority declares not to be influenced by their religion. From the latter, most of the couples have thought throughly their moral arguments in relation to abortion, PGD and PGD/HLA. Where religion forbids the PGD/HLA procedure, people sometimes experience internal moral conflicts as one man verbalised it: 'I'm sure god wants me to save my child'. Conclusion Although a minority of couples refers explictly to the moral rules of their religion, most people fit their choices in an ethical framework which gives a more universal meaning to their actions. The decline of metanarratives in this clinical encounter doesn't impede couples from constructing a meaningfull world view.