Generations later, the rights of donor-conceived people are becoming law

Colorado Senate president Steve Fenberg has just introduced groundbreaking legislation on the rights of donor conception. Although focused on Colorado, that legislation could affect the multi-billion-dollar fertility industry and the tens of thousands of children born each year from donor conception. 

The Colorado legislation goes beyond what any other state has done. It provides that, once they turn 18, donor-conceived people can learn the identity of their donor. In addition, it sets limits on the number of families who create children through any particular donor and requires the creation and availability of materials that provide guidance for donor-conceived people, recipients and donors throughout the process, including disclosure to donor-conceived children.

In considering such legislation, Colorado has stepped into a vacuum. At the national level, there’s an absence of clear rules and laws regulating assisted reproductive technology. The federal government requires only that donated sperm and eggs be treated like other human tissue and tested for communicable diseases — infectious conditions that spread through viruses, bacteria and other means — but not genetic diseases. There are also no federal requirements that sperm banks obtain and verify information about a donor’s medical history, educational background or criminal record.

Because the federal government does not track assisted insemination by donor, the number of donor-conceived people is unknown, although there is somewhat better data on children born through egg and embryo donation.

Yet technology is showing the cracks in this system of non-regulation. DNA tests, including direct-to-consumer kits like 23andMe, are rendering donor anonymity increasingly difficult to maintain. Novelist Dani Shapiro found out, via genetic testing, that she was donor-conceived at age 54 and, through the internet, found her donor. Internet searches also make it easier to see whether a donor, once identified, has misrepresented their personal information. For example, in Georgia, a couple sued a sperm bank after learning that the sperm donor had misrepresented his level of education and failed to disclose his diagnosis of schizophrenia, a heritable mental health condition, or his prior arrest. As more donor-conceived people discover their origins, there is a growing movement to recognize their interests in a process that has not focused on their needs and interests.

Although the federal government has not gone beyond minimal regulation, such as requiring that donor gametes be tested for various sexually-transmitted diseases, states are free to regulate here as they see fit, consistent with the commerce clause and other state and federal constitutional guarantees. Indeed, states are beginning to take action in this area relying on their authority to do so as part of their police powers and because of their interest in protecting children. While the Supreme Court has protected the right to procreate, it has not protected the right to procreate with the person of one’s choice, as some courts have noted. In fact, states have criminal sanctions against such violence. Moreover, the government is already active in the donor conception area, providing different rules for children born through donor conception (such as Colorado has done for parentage) than for children born through other means.

States have a rational, if not even compelling interest, in regulating the commercial industry of gamete and embryo banks to protect the well-being of donor-conceived children, recipient parents and donors. And they are beginning to legislate in ways that protect those interests, including ensuring that donor-conceived people and their parents receive important information about the medical, criminal and history of donors.

Some states, such as California and New York, impose requirements on sperm banks while other states, such as New York and Ohio, impose requirements on donors.  An increasing number of states have enacted fertility fraud legislation.

Other states have started to address the disclosure of donor-identifying information and medical history when a child turns 18. A number of states, including California, Connecticut, Rhode Island and Washington have enacted the Uniform Parentage Act. The measure requires that fertility clinics collect identifying information from donors and indicate whether donors have agreed to disclosure. Even if the donor has not consented to disclosure the clinic must make a “good faith” effort to provide the child with nonidentifying information and to notify the donor of any request for information, allowing the donor to reconsider the disclosure declaration. 

Another pending measure in New York would require sperm and egg donor banks “to collect and verify medical, educational and criminal felony conviction history information” from any donor. That legislation would also provide prospective parents who purchase eggs or sperm and donor-conceived people with the right to obtain such information without personally identifying the donor. This option could make it possible to preserve donor anonymity, at least theoretically.

The need for legislation like Colorado’s proposed bill is clear.  First, anonymity — as a pragmatic matter — can no longer be guaranteed. Accordingly, state regulation can help set out thoughtful guidelines that are responsive to the various interests at stake. Second, and more fundamentally, donor-conceived people have interests that this legislation will protect. Not all donor-conceived people know about their origin, and many express an interest in knowing more about their donors, including medical and identifying information. 

Consider the study from the Sperm Bank of California, in which, over a 10-year period, adult donor-conceived offspring from 256 families were eligible to receive identifying information, 85 (35 percent) contacted the clinic for this purpose. Many of those who contacted the clinic did so within the first three years after they turned 18, with the most common motivation to obtain information about their donors, including who they are as a person, their reasons for donation and their medical and health information. Third, recipients have a strong interest in knowing about the health risks their future children may experience based on the medical history of the donor.

Colorado’s groundbreaking legislation provides fairness to donor-conceived people and their families that has been absent for too long. More states should follow their example.

Naomi Cahn is a professor of law at the University of Virginia School of Law and co-director of UVA Law’s Family Law Center.

Sonia Suter is a professor of law at The George Washington University Law School and founding director of the Health Law Initiative.