The state of Washington is set to become the first state in the US to allow children conceived through sperm or 
egg donation to gain access to crucial health information about their biological parents.
A new law requires donors to provide, “at a minimum,” identifying information and medical history to the fertility clinic.
It follows on from UK legislation which has required sperm donors to renounced their anonymity since 2005. This came after Joanna Rose, herself conceived by sperm donation, won a case in the British High Court. The Court found that donor-offspring had the right under the Human Rights Act
However, unlike the UK provision, which allows donor-conceived children access to the identity of their genetic parents once they reach the age of 18, this law will allow sperm or egg donors to sign an affidavit of nondisclosure to prevent their biological offspring from seeking them out.
Until now, no US donor-offspring were entitled to any information about their donor and medical information was rarely updated or shared among donors and recipient families.
Advocates for donor children say that the new law is not perfect but it opens the door to national recognition of rights for these children.
Exact numbers are not known, but experts speculate that there are about 1 million donor-conceived children in the United States, according to a 2003 report in the journal Nature.
Wendy Kramer, co-founder of the Donor Sibling Registry, says that the fertility industry in the United States is one of the least-regulated among developed nations.
“There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records,” said Kramer, who conceived her son through sperm donation. “No one is watching. There are no laws. They don’t keep track.”
Ireland’s IVF industry is completely unregulated. In 2005, the Government’s Commission on Assisted Human Reproduction (CAHR) published recommendations for the regulation of all forms of assisted human reproduction, which recommended, among other things, that donor-offspring should be allow
Under guidelines from the US Government’s Food and Drug Administration (FDA) donated sperm cannot have any “relevant communicable disease or agent,” but there is no limit on how many donations can be made by one person nor is there any sharing of medical information between the donor and the child’s family.
Sean Tipton, spokesperson for American Society for Reproductive Medicine (ASRM) has criticised the new law, saying that it will “change the rules in the middle of the game.”
“We think that it’s important that parents be allowed to make decisions on how to build their families,” he said. “I don’t think there’s a way to make human reproduction perfect.”
“It’s unfortunate that anyone who has ever developed a disease or disorder, but they will and all you can do is use the best and most practical screening available at the time of donation,” he said. “You can’t screen for everything.”
By law, donors need only screened for sexually transmitted diseases and some communicable diseases.
At the very least, donor-offspring advocates say sperm and egg donors should have “vigorous” face-to-face medical screening and genetic testing for diseases like cystic fibrosis, Tay-Sachs disease, Fragile X syndrome, among others.
Unless donors have a relationship with the child’s parent, the donor is anonymous and only has a number. Advocates say that practice should end.
In May, a Supreme Court in the Canadian province of British Columbia struck down provincial legislation that protected the identity of sperm donors.
The judge also prohibited the future destruction of any records and ordered the province to draw up new legislation, extending the rights of adopted children to donor-conceived children.
Washington state lawyer Mark Demaray, who works with many couples seeking IVF and is president of the American Academy of Adoption Attorneys, said the American fertility industry should also look to the adoption world as a model.
When a child is adopted, all details on the social and medical history of the biological parents must be kept in court records in case of a medical emergency.
“That hasn’t been required with ART, where a child may not have the ability to find a donor or medical information,” he said. “What about when he needs a bone marrow transplant or a blood transfusion? The donor child is at a disadvantage.”
“And when the clinic goes out of business and where are those records?” he asked. “There are many practical problems.”
Mr Demaray said the Washington law has problems, including the waiver of disclosure.
But, he said, the new law is a “first step” and may lead to a national donor registry to keep track of donors and their offspring.