Ethical issues in ancestry-related preconception screening. An interdisciplinary case study on consanguinity and preconceptional testing in relation to health risks among Dutch Moroccans and Turks
What meaning do Dutch Moroccans and Turks attribute to consanguinity, preconceptional carrier testing, and reproductive options, and how can their views be used in developing and implementing the VERWANT technology?
Duration: March 2011 - August 2012
In the Netherlands we assume that marrying a direct relative is unwise, because it will raise the risk for children with genetic disorders. However, for immigrants living here, in particular Moroccans and Turks, marriages between cousins is ordinary. Consanguineous couples have an increased risk of offspring with an autosomal recessive disorder. For first cousin couples the risk is in average 2 to 3 percent higher.
Geneticists of VU University Medical Centre have developed a test for such couples to estimate the risk that their children will have a genetic disorder. The questions at hand in this project are: are these migrants interested in such a test? And which considerations play a role in this issue?
For this study, the researchers have conducted six group discussions (86 Turkish an Moroccan Dutch female informants); in-depth interviews (12 informants); interviews with key figures from migrant groups (9 informants) and general practioners (4 informants) and anthropological research in Morocco (2009,2010,2011) in Turkey (2012).
The results show that cousin marriage is still a well-known marriage pattern, for especially the first generation. It is also a preferred marriage, but this is changing. In addition, a division is made between cousins you can and cannot marry. Cousins with whom you grow up with are considered siblings, and siblings you cannot marry. But when there is no emotional proximity to the cousin, often alongside geographical distance, a cousin might be an eligible spouse.
The respondents view preconceptional testing primarily as a means to determine whether they have a high or low risk of a child with a disability. It is the knowledge and the time they have to prepare themselves, that is valued. Part of the respondents were in favor of premarital testing. Furthermore, the respondents do not have a clear idea about the reproductive options that are available in the Netherlands. They only mention prenatal testing and possible abortion. The latter is rejected by almost all our respondents. The respondents however are very positive towards PGD/IVF. Preventive measures are acceptable – also from a religious point of view according to our respondents – before an actual pregnancy is established, as is the case with PGD/IVF.
Will follow soon.