A story in today’s Daily Mail reveals some of the harms experienced by children born to sperm donors. Since 2005, children born to sperm donors have had access to the identity of the man who donated sperm that created them. But prior to that point, donors were not required to disclose their identity. These children are often susceptible to diseases which have a genetic component, like diabetes or bowel cancer, and are unaware that they have such susceptibility. They also sometimes describe a sense of not fitting in with their family, having a different personality and character. Many desperately and vainly seek out their biological fathers.
One problem is that historically, donors gave sperm on the condition of anonymity. Thus they consented believing they would remain anonymous. This was the case in Victoria, Australia, where similar problems have been reported. The option to remain anonymous was thought to be necessary to ensure a supply of willing donors, and to protect donors from financial and other claims made by their offspring. But now we place greater value on the genetics of the donor and many children wish to know their biological father and his genes.
So donors have a legitimate interest, based on the conditions of their consent and self interest, in protecting their anonymity. How is this interest to be weighed against the interests in their offspring accessing knowledge about them?
This is a problem of genetic privacy. Here the right to privacy of the donor conflicts with the interests of the offspring. This is a general problem. In many cases, genetic information from individuals would be of public benefit, for example, by contributing to genetic databases for the study of disease. It is often thought that such information can only be accessed with the consent of the donor. If this were the case, then donors could only be approached by healthcare providers and asked if they agree to now be identified and their children put in contact with them.
This, for me, is a poor solution to this conflict between those who hold valuable genetic information and those who might benefit. What is really at stake is the interests of information donors, in this case, the sperm donor. What we need are strict laws to protect such individuals from harm, for example, from financial claims. And we need compensation for those who are harmed as a result of release of genetic information.
If we had measures – preventative and compensatory – for protecting the interests of information donors, including sperm donors, we could both protect their interests and provide great benefits to others, in this case their biological offspring.
More broadly, if we could take genetic information without consent, say from the blood donor pool, for research, we could achieve significant public benefit through the much more rapid and efficient study of genetic disease. What would legitimate this is not necessarily consent, but institutional and legal instruments to prevent harm to donors and to generously compensate them for any harm that does occur.
The right to genetic privacy can be breached for the benefit of others provided people’s interests are adequately protected. In this way we can harness the benefits of modern genetics, without harming people. We can have our cake and eat it too.
In the case of sperm donors, a system of obligatory identification of past donors would be justified if a sufficient set of protective and compensatory instruments were put in place. We need not always rely on consent to derive benefit from genetics.