Conceived and deceived: the medical interests of donor-conceived individuals.

HASTINGS CENTER REPORT 17 Many donor-conceived individuals want to know their genetic origins. This has become a growing issue of public debate and bioethical concern. Some concentrate on their interest in donors’ medical and genetic information, which can be relevant to medical decision-making. Others emphasize broader interests in donors’ personal information, which could help donor-conceived individuals construct their identities and thus promote their psychological well-being. While both interests have already been acknowledged as deserving legal protection in several jurisdictions worldwide, legislators in the United States have only just taken a first step in this direction. Effective July 22, 2011, a new law in the state of Washington requires any donor of sperm or eggs to provide a medical history and identifying information to fertility clinics. It also allows donor-conceived individuals to request this information from clinics once they reach the age of eighteen. This is a significant legislative milestone and a promising development in a country that has consistently shied away from regulating the infertility industry in any way. Although donors may still veto disclosure of their identifying information, offspring will now have guaranteed access to nonidentifying medical history. This represents a tremendous improvement over the current reality in all other U.S. states, where fertility clinics can destroy donor medical records before the child turns eighteen. In Canada, although the Assisted Human Reproduction Act mandated the registration of information related to donors and donor offspring as early as 2004, this measure has never been implemented, and consequently Canadian clinics can also destroy donor records. This has been the experience of Olivia Pratten, a journalist conceived through anonymous sperm donation who has been unsuccessfully attempting for years to access medical and identifying information about her donor. Pratten decided to take her case to court in an attempt to change the legal reality for future generations of donorconceived individuals. Relying on principles of equal treatment, she argued that donor-conceived individuals are being systematically discriminated against when compared to adoptees, who have legal rights to information about their genetic origins. “Before forming an opinion about this,” she says, “I always ask people to put themselves in my shoes: if you found out tomorrow that your dad wasn’t your biological father, could you honestly say that you would be satisfied never knowing who he was? And furthermore, would you tolerate being told you had no right to find out?” In May 2011, the Supreme Court of British Columbia rendered a decision in her favor, giving the province fifteen months to draft new legislation that will not violate Section 15.1 of Canada’s Charter of Rights and Freedoms. The Court also granted a permanent injunction to prohibit the destruction and disposal of the records of gamete donors. The government of British Columbia appealed the decision shortly thereafter, arguing that the trial judge erred in law. However, if this landmark decision is upheld, it will be an important legislative milestone for Canada. The future of this case is of great interest in particular since in December 2010, Canada’s Supreme Court—following a constitutional challenge by the Essays