This project, sponsored by the Pink Ribbon Foundation, the Jules Coenegracht Foundation and ZonMw, was designed to investigate the psychosocial aspects of a PGD-treatment. With this project we strive to improve and personalize guidance and support for couples regarding PGD decision making.
The study mainly focusses on the indication hereditary breast and ovarian cancer (HBOC/BRCA). Partly because this is the most frequent indication for PGD in the Netherlands and partly because HBOC is an exceptional indication when it comes to psychosocial considerations regarding PGD, like:
- the increased cancer risk which is considerably lower for a boy than it is for a girl;
- the advised prophylactic surgeries which have a negative influence on the female’s fertility resulting in a narrow time window in which PGD can take place;
- the possible influence of the IVF-hormones on the female’s cancer risk which has not been thoroughly investigated and remains a concern for many couples.
The project was setup by a mixed methods design, using both qualitative and quantitative research methods and states three objectives:
- To assess PGD awareness among couples with HBOC and among involved professionals.
- To assess these couples’ needs for guidance and support during PGD decision making.
- To identify these couples’ motives and considerations regarding PGD decision making.
In addition, this project aims to investigate couples’ experiences with PGD, the psychological impact of PGD and the subsequent satisfaction rate among a more extensive subgroup (couples with the four most frequent PGD indications).
Supervisors: prof. Christine de Die-Smulders, MD; prof. Vivianne Tjan-Heijnen, Liesbeth van Osch, PhD
Researcher: Joyce Gietel-Habets
- Decision-making on preimplantation genetic diagnosis and prenatal diagnosis: a challenge for couples with hereditary breast and ovarian cancer. Derks-Smeets IA, Gietel-Habets JJ, Tibben A, Tjan-Heijnen VC, Meijer-Hoogeveen M, Geraedts JP, van Golde R, Gómez-García E, van den Bogaart E, van Hooijdonk M, de Die-Smulders CE, van Osch LA. Hum Reprod. 2014 May;29(5):1103-12. Pubmed
- Awareness and attitude regarding reproductive options of persons carrying a BRCA mutation and their partners. J.J.G. Gietel-Habets, C.E.M. de Die-Smulders, I.A.P. Derks-Smeets, A. Tibben, V.C.G. Tjan-Heijnen, R. van Golde, E. Gómez-Garcéa, C.M. Kets, L.A.D.M. van Osch. Hum Reprod. 2017 Mar 1;32(3):588-597. Pubmed
- Professionals’ knowledge, attitude and referral behaviour of preimplantation genetic diagnosis for hereditary breast and ovarian cancer. JJG Gietel-Habets, CEM de Die-Smulders, VCG Tjan-Heijnen, IAP Derks-Smeets, R van Golde, E Gómez-García, LADM van Osch. Reproductive BioMedicine Online, Volume 36, Issue 2, February 2018, Pages 137-144. PDF download on website ScienceDirect