Abstract
Study question
What is the opinion of gamete donors on extended carrier screening in Denmark and in US?
Summary answer
This study showed that the overwhelming majority of the donors were very positive towards genetic testing in general and the expanded carrier screening.
What is known already
There is a lack of empirical studies on the experiences of and attitudes of donors towards expanded carrier screening (ECS) (Amor et al. 2018). Oocyte donors in a Spanish clinic were surprised by the information on testing and the possibility of being carriers (Abuli et al., 2016). After adequate genetic counselling before and after the test, the results of testing did not seem to have a meaningful emotional or psychological impact on the donors.
Study design, size, duration
A questionnaire was emailed to all active sperm donors in a sperm bank in Denmark and in a sperm bank in US.
Participants/materials, setting, methods
A total of 393 donors received the email of which 233 donors completed the questionnaire, 196 in Denmark (response rate of 60.7%) and 37 in the United States (response rate of 52.9%).
Main results and the role of chance
We systematically compared the US and DK donors and ID-release versus non-ID-release donors for all characteristics and items. ID-release donors with a partner significantly more informed their partner about their donor status than non-ID-release donors (90.5% vs. 72.4%, p 0.027). ID-release donors significantly more intended to tell their own children (57.5% vs. 21.2%, p 0.001). ID-release donors significantly more thought about their potential donor children (56.2% vs. 35.0%; p 0.002) and significantly more likely to want information on whether a pregnancy occurred from their donation (70.6% vs. 55.0%, p 0.017). In addition, they also significantly more wished to obtain information about the children conceived with their sperm: the number of children (64.0% vs. 50.0%, p 0.048), their gender (40% vs. 26.2%, p 0.042), and their health (59.3% vs. 42.5%, p 0.018). The ID-release donors were much less likely than the other type not to want any information (19.3% vs. 32.5%, p 0.034). This general attitude is extended to the wish to be informed if a child with a hereditary disease is born after using their sperm. The ID-release donors were more likely to desire contact if their genetic child was diagnosed with a genetic disease (73.9% vs. 55.0%, p 0.003).
Limitations, reasons for caution
The main element that makes the study unique (i.e., the choice between ID-release and non-ID-release) also renders the generalization of the findings more difficult. Wider implications of the findings: A better understanding of the attitude among gamete doners will possibly guide future legislation and ensure the safety and welfare of the donors too.
Trial registration number
none
INTRODUCTION OF EXPANDED CARRIER SCREENING (ECS) HAS INCREASED REFERRALS FOR PREIMPLANTATION GENETIC TESTING FOR MONOGENIC CONDITIONS (PGT-M)