Expanded carrier screening should not be mandatory for gamete donors

Abstract

More and more centers are imposing expanded carrier screening (ECS) on their gamete donors. In some clinics and gamete banks, gamete donors are not given this right, contrary to the freedom to decline genetic screening in the general population. The possible social and psychological burdens that are recognized for infertility patients and the general population are downplayed for gamete donors. The procedure of imposing ECS on gamete donors shows that the interests of the recipients are valued higher than those of the donors. The general ethical argument defended here is the principle of proportionality: the burdens imposed on donors have to be balanced against the potential benefits for the offspring and the recipients. The risk reduction of ECS is below 1% and is too small to outweigh the potential dangers and disadvantages for donors. The conclusion is that clinics may ask, but not compel, donors to submit to ECS provided that they offer appropriate genetic and psychological counseling.

A SWOT analysis of unregulated sperm donation

“…One of the prime examples of this belief is the introduction of mandatory expanded carrier screening for donors (Payne et al, 2021). The gain in risk reduction of ECS is minimal (below 1%) (Pennings, 2020). However, the disadvantages are considerable: some donors will refuse to be tested and drop out, others will be excluded because of a (small or uncertain) genetic risk, and genetic testing will further increase costs.…”

Attitudes of sperm donors towards offspring, identity release and extended genetic screening

“…It is difficult to speculate whether the donors' attitude would change if the screening panel were extended with dominant diseases and predispositions to diseases such as cancer. At present, sperm banks and clinics use very different panels, some containing hundreds of diseases including diseases whose detection may have a direct impact on the donors' future health and/ or reproduction (Pennings, 2020). The attitude of the donors in this study differs considerably from that of Australian donors who were much more concerned about increased genetic testing and who, if tested, did not want to know the results (Amor et al, 2018).…”

Fertility stakeholders’ concerns regarding payment for egg and sperm donation in New Zealand and Australia

“…The concern that payment may encourage misrepresentation or a lack of honesty in terms of disclosing medical, family or social histories has been reported in other research, and is similarly linked to concerns that this may negatively affect offspring ( Kalampalikis et al, 2012 , Lee et al, 2017 ). Although the advent of expanded carrier screening of donors may reduce the likelihood that donors will conceal relevant medical and health information, carrier screening remains controversial given the potential implications for donors, such as loss of privacy ( Pennings, 2020 ), and it still does not address the concern that relevant psychosocial histories (e.g. psychiatric illness), which carrier screening may not identify, may be misrepresented.…”