Ethical quandaries around expanded carrier screening in third-party reproduction

Heidi Mertes, Steven R. Lindheim, Guido Pennings

Although current screening methods of gamete donors are capable of reducing the incidence of genetic anomalies in donor offspring below general population levels, targeted screening for a large number of conditions (expanded carrier screening or ECS) could be considered as part of the routine selection procedure for gamete donors. There are, however, important drawbacks to its practical implementation. Excluding all carriers of severe recessive monogenic pediatric disorders would disqualify virtually all donors, and other approaches negatively affect cost (and therefore access), present dilemmas in regard to disclosure of genetic findings, and/or overburden the intended parents. In all of the scenarios considered, adequate genetic counseling will be of central importance. Besides looking at benefits and drawbacks of possible ways of implementing ECS, we also examine whether a moral obligation exists to adopt ECS at all and on whose shoulders such an alleged obligation would rest: policymakers, medical staff at fertility clinics, sperm and egg banks, the intended parents? We argue that given the small risk reduction brought about by ECS, the possible negative effects of its implementation, and the absence of widespread preconception carrier screening in the general population, it is inconsistent to argue that there is a moral obligation to perform ECS in the context of donor conception. Finally, implications for the donors are discussed.