Expanded carrier screening: ignoring the interests of gamete donors?

More and more fertility centres are imposing expanded carrier screening (ECS) on their gamete donors. ECS allows for the detection of the carrier status of hundreds of recessive disorders in donors who are not at an increased risk. Clinics may have a number of reasons for introducing ECS: demonstrate quality of service, outcompete competitors and avoid legal liability for disabilities in offspring. Recipients may want to minimise the reproductive risk as much as possible. However, it seems that the interests of the donors are ignored in this development.

Donors are helping others to realise their family. The general question is what one can reasonably expect from such a person. It seems obvious that certain things can be demanded: screening for sexually transmissible diseases, truthful information on medical conditions and family history. These tests are justified by the health interests of the offspring, and indirectly, by the reproductive autonomy of the would-be parents. Should ECS be an integral part of this testing?

To answer this question, one should look at the balance between the possible benefits and the possible burdens for the parties involved. Proportionality requires that the burdens imposed on the donors have to be balanced against the potential benefits for the offspring and/or the recipients. Despite the fact that most screening panels are testing for tens or hundreds of diseases, the general risk reduction of ECS is below one percent. This is a small gain, especially taking into account the residual risk.

If prospective parents would have to perform every possible act that might reduce a health risk of one percent for their future offspring (follow a diet, abstain from tobacco, reduce weight, have their child earlier...), they would have a full-time job. But intended parents, who carry a larger moral obligation to prevent harm to future offspring than gamete donors, are not obliged to undergo ECS.

Moreover, if risk reduction for the offspring is the primary goal of ECS in gamete donors, then how does one explain that in some countries two good quality embryos created with donor eggs are transferred, leading to a multiple pregnancy rate of 30 percent and higher? The very small risk reduction obtained by ECS is largely undone by the increase in morbidity and mortality due to multiple pregnancies.

What are the possible disadvantages of ECS for gamete donors? These consequences are generally the same as for other people, with the big difference that a donor is not looking for genetic information for his or her own reproductive plans. Intended parents collect the information because they want to reduce the risk for their future child, donors don't. Moreover, a closer look at the screening panels show that genetic information is collected which may have implications for the donor's own reproductive plans in the future and for the donor's own health and healthcare.

Many mutations that may be detected may have direct health consequences for the carriers. Moreover, genetic information is considered to be highly personal and private information. Since anonymity can no longer be guaranteed, all genetic information of the donor is shared with (potential) recipients so that they can make a choice. This infraction of the donor's privacy is not even considered in the debate on ECS.

While there would normally be a time gap of 18 years before the identity of the donor is released in countries with an identity-release donor, no such gap exists for known donors. So how are we going to manage the health information when a friend or family member wants to donate? There is an urgent need to develop a detailed information management plan where it is decided which information is collected (ie, which diseases should be included in the panels), who will receive what information and how information will be shared with the donors and others.

An interesting point about ECS for gamete donors is that screening is approached from a completely different angle than ECS for other people. While the freedom to decline genetic testing is strongly defended for the general population, recipients and IVF patients, this freedom is readily denied to gamete donors. This is strange, since donors may have exactly the same psychological, social and ethical objections against obtaining genetic information as other people do: not wanting to know, anxiety, threat to privacy, and discrimination.

A large part of the explanation for the differential treatment may lie in the perception of the donor as a provider of material who gets paid for his or her contribution. As a consequence, their interests are not valued equally to recipients' interests. Donors seem to be considered as second-class participants who should do whatever is in the interests of the recipients. The fact that they are paid, seems to reinforce this attitude.

A serious re-evaluation of the current attitude is needed to protect the donors' interests.

Professor Guido Pennings will be speaking on this topic at the free-to-attend online event 'Careful What You Look For: What Should We Be Testing For in Sperm and Egg Donors?', taking place from 5.30pm-7pm on Tuesday 8 September 2020.

Find out more here, and register for your free place here.