Abstract
BackgroundCousin marriages, in the Netherlands most frequently between Turkish or Moroccan couples, are at higher risk of having offspring with recessive disorders. Often, these couples not perceive or accept this risk, and it is hardly considered a reason to refrain from family marriages. Preconception carrier screening (PCS) is offered to Jewish groups, and more recently in the Netherlands, to genetically isolated communities. In this study, Dutch Moroccan and Turkish women’s perspectives on preconception carrier screening (PCS) and reproductive choices were explored.MethodsIndividual interviews were held with Dutch Turkish and Moroccan consanguineously married women (n = 10) and seven group discussions with Turkish and Moroccan women (n = 86). Transcripts and notes were analyzed thematically.ResultsAll women welcomed PCS particularly for premarital genetic screening; regardless of possible reproductive choices, they prefer information about their future child’s health. Their perspectives on reproductive choices on the basis of screening results are diverse: refraining from having children is not an option, in vitro fertilization (IVF) combined with pre-implantation genetic diagnosis (PGD) was welcomed, while prenatal genetic diagnosis (PND), termination of pregnancy (TOP), in vitro fertilization with a donor egg cell, artificial insemination with donor sperm (AID), and adoption, were generally found to be unacceptable. Besides, not taking any special measures and preparing for the possibility of having a disabled child are also becoming optional now rather than being the default option.ConclusionsThe women’s preference for PCS for premarital screening as well as their outspokenness about not marrying or even divorcing when both partners appear to be carriers is striking. Raising awareness (of consanguinity, PCS and the choice for reproductive options), and providing information, screening and counseling sensitive to this target group and their preferences are essential in the provision of effective health care.
Highlights
Cousin marriages, in the Netherlands most frequently between Turkish or Moroccan couples, are at higher risk of having offspring with recessive disorders
In the Netherlands, preconception screening (PCS) is offered and studies are conducted to assess preferences for targeted carrier screening among Jewish groups and, more recently, among genetically isolated communities [1, 2]
We have considered the most common reproductive options that follow upon an unfavorable outcome of preconception carrier screening (PCS): (1) refraining from having children; (2) termination of pregnancy (TOP) after prenatal genetic diagnosis (PND); (3) in vitro fertilization (IVF) combined with Pre-Implantation Genetic Diagnosis (PGD); (4) in vitro fertilization with a donor egg cell; (5) artificial insemination with donor sperm (AID); (6) adoption, or (7) not taking any special measures and/or preparing for the possibility of having a disabled child
Summary
In the Netherlands most frequently between Turkish or Moroccan couples, are at higher risk of having offspring with recessive disorders. In the Netherlands, preconception screening (PCS) is offered and studies are conducted to assess preferences for targeted carrier screening among Jewish groups and, more recently, among genetically isolated communities [1, 2]. A consanguineous marriage is defined as an intra-familial union between people who are second cousins (fifth-degree relatives) or closer related family members [3, 4] These couples more often have identical DNA inherited from a common ancestor. They are a target group for preconception carrier screening (PCS) for rare diseases beyond already identified and highly prevalent recessive disorders such as thalassemia [3, 4]. We have considered the most common reproductive options that follow upon an unfavorable outcome of PCS: (1) refraining from having children; (2) termination of pregnancy (TOP) after prenatal genetic diagnosis (PND); (3) in vitro fertilization (IVF) combined with Pre-Implantation Genetic Diagnosis (PGD); (4) in vitro fertilization with a donor egg cell; (5) artificial insemination with donor sperm (AID); (6) adoption, or (7) not taking any special measures and/or preparing for the possibility of having a disabled child
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