THE ETHICS COLUMN
Should We Unmask Sperm Donors?
By Jacob M. Appel MD JD
Arthur Kermalvezen wants to know who his father was. The 34-year-old Frenchmen, conceived through artificial insemination, is at the forefront of the movement to repeal his nation’s law guaranteeing anonymity to sperm donors. France’s États généraux de la bioéthique, an independent advisory body, is currently debating legislation to end anonymous donation—a change which would align French laws with those of Germany, Great Britain and much of Scandinavia. In contrast, anonymous donation is widely accepted in the United States, where donors have a right to provide or to withhold their identities.
Kermalvezen’s interest in his paternity exceeds idle curiosity. Not knowing one’s genetic history has significant medical implications: One might not know one’s risk for a preventable or treatable condition such as early-onset colon or breast cancer. Some of this data might be available through genetic testing: Yet such testing is heavily restricted in France and Kermalvezen had to order tests through a private company at his own personal expense. Even if France were to liberalize its genetic testing laws, a move long overdue, other aspects of a predictive family history, like a high familial incidence of suicide, cannot be detected through DNA analysis. Only asking one’s father directly, or knowing his family history, can provide this potentially life-saving information.
Anonymous sperm donation is not without its advocates. The major beneficiaries are infertile couples who have a wider sample of prospective donors from which to choose. Sweden, the first nation to ban anonymous donation, suffers from chronic shortages of donors—with many couples forced to travel to Denmark for IVF. After banning anonymous donation and compensation for donors, New Zealand now faces a two year waiting list for sperm. For racial and ethnic minorities seeking donors of the same background, especially in communities where donation is stigmatized, identifying donors risks drying up the supply entirely. Without anonymous donation, IVF babies like Arthur Kermalvezen might not exist at all.
Some commonsense common ground is available. The simplest approach is to require all sperm donors seeking anonymity to undergo genetic testing and to provide complete medical records from a personal physician prior to donation. While potential donors might lie on a medical screening form, fabricating an entire medical chart would prove far more challenging. One drawback is that genetic testing can only screen for conditions known at present. Who knows what genetic and epigenetic phenomena will be part of one’s medical history in future years. Another alternative to address this concern would require storing DNA for later analysis, but such a requirement entails both a privacy risk and the danger that this same DNA can be used to identify the donor.
Of course, the common ground makes sense only if the goal is to know one’s genetic and familiar history—rather than pursuit of the more abstract right to know the actual identity of one’s father. Why this would be a fundamental right—independent of its practical implications—remains unclear? After all, babies are born to single mothers every day, many of whom never learn their father’s identities, and whether or not such circumstances are ideal, few would argue the fundamental rights of these children have been violated. #