This blog is co-authored by Naomi Cahn and Wendy Kramer.
As women postpone having children and face the ticking of their biological clocks, they may turn to donor eggs or donor sperm to help them have children. For women (and men) in Washington State, the fertility industry will be transformed in late July, 2011. Under a law recently signed by the governor, anyone who provides sperm or eggs to a fertility clinic in the state must also provide identifying information and a medical history. While that is, in fact, a customary practice for most fertility clinics, another part of the law will allow children born from donated gametes to return to the fertility clinic when they reach the age of 18 to request the identifying information and the medical history. Although the donor can file a disclosure veto that prevents the clinic from revealing the identifying information, the donor offspring will still be entitled to the medical information.
No other U.S. state has taken the same steps. Not only can fertility clinics destroy records long before the child turns 18, but also donor offspring are not entitled to any information about their donors and medical information is rarely updated and shared amongst donors and recipient families.
Some international laws are different. Sweden enacted legislation in 1984 that allows donor offspring the right to receive identifying information about their donor. Other countries have followed, with Austria, New Zealand, the Netherlands, Norway, Switzerland, the UK, and some states in Australia all prohibiting anonymous gamete donation, and also setting up systems to help people find out their donor's identity. In May, shortly after the governor signed the Washington state legislation, the British Columbia Supreme Court declared that people conceived by donor gametes had to be treated in the same way as people who had been adopted with respect to accessing information about their biological parents.
The new Washington law is an important milestone. It is, however, flawed, because it includes a disclosure veto, allowing the donors' alleged interests in privacy to trump the interests of donor-conceived offspring and the intending parents in learning the donor's identity. For many donor offspring, learning about their biological parent is much more than just learning about their medical history. The issues and concerns of donor offspring are often complex and multi-dimensional. Many feel that until they know about their ancestral, genetic heritage, they will not properly be able to form a full self-identity. As in adoption, many speak of the great desire to know their biological parents so that they can better understand themselves. After many decades of silence, and fueled by the movement towards full disclosure within families, the voices of donor conceived people are being heard round the world, and they demanding what they see as their basic human rights to know about and connect with their genetic families.
Vasanti Jadva, at the Centre for Family Research at the University of Cambridge, collaborated with Wendy Kramer and several others in a study looking at the experiences of donor offspring in searching for, and contacting, their donor siblings and donor. They recruited 165 participants through the Donor Sibling Registry, so there was already some curiosity about their origins. Among the participants, 77% were searching for their donors and listed the top reasons for searching as "Curiosity about characteristics of your donor", "Wanting to meet your donor ", "Medical reasons", and "To have a better understanding of why I am who I am."
More recently, (Human Reproduction, In Press, Beeson et al.) in the largest study of donor offspring (751 in total), with about half of the respondents coming from the general public, 82% of respondents indicate the desire to be in contact someday with their donor. Top reasons for searching were "To see what he looks like", "To learn more about my ancestry" and "To learn more about myself".
As some of them explained:
• "It makes me angry that I am denied the basic right of knowing who my father was and what ethnicity I am."
• "Angry and frustrated that I can't get information about my heritage, genetics, looks, and medical history. I feel that half my identity has been stolen by the doctor, and that is unjust."
While there are fears that lifting anonymity might cause a donor shortage, the experience in other countries provides a useful antidote. A reported shortage of sperm in the United Kingdom has been blamed on the removal of anonymity. As journalist Liza Mundy documented last year, however, "there has not been a decline in registered sperm donors following the 2005 change, and it's arguable that there is not a shortage of donor sperm now. The number of sperm donors has risen in the UK since the identity-disclosure rule took effect." There are also fears that banning anonymity is part of a slippery slope towards regulating not just what gametes are available but who has access to those gametes. This is unjustified. In fact, the UK extended equality of treatment to same-sex couples after it abolished anonymity.
Washington has taken the first step towards what we hope will be a new attitude of openness throughout the country.