Donor-Conceived People Need to Know Their Medical History

The first international Genetic Identity Day comes just as Health Canada seeks to prevent people from knowing their genetic identity

People have a moral right know their medical, social and cultural history, and the identity of their genetic parents. And this right applies to those who have been adopted or conceived by egg and sperm that were either sold or given.

This moral right is marked in Canada, the United States and the Netherlands on May 30 as the international day to recognize the right to genetic identity.

The idea that people should be denied knowledge of their genetic identity arose when out-of-wedlock births were shameful. Pregnant, unmarried women would often be socially required to hide their pregnancies by giving birth far from their homes and to surrender their children in adoption, never to see them again. 

When married women with infertile husbands became pregnant by donor conceptions in the post-Second World War era, the stigma of having a so-called illegitimate child led physicians to advise the pregnant women not to reveal the provenance of the sperm that led to the conception.

 So, some people – adoptees and donor offspring – were denied basic information about themselves that most of us have and take for granted.

Now, adoption disclosure legislation in many Canadian jurisdictions gives people access to their birth and parentage records. But such records are not created, preserved or released to a second class of people: those who were conceived using assisted human reproductive technologies.

This new international day seeks to remind us that such information is important and to draw attention to its lack.

Ironically, the first international Genetic Identity Day comes just as Health Canada seeks to prevent people from knowing their genetic identity and from having access to their records.

In developing and amending regulations under the Assisted Human Reproduction Act, Health Canada has proposed the Safety of Sperm and Ova Regulations. These proposed regulations require that records, created to prevent infectious disease transmission, be coded so the gamete provider can’t be identified to his or her offspring. 

Moreover, Health Canada proposes that the records may be destroyed before the resulting child might appreciate their value, by the time the child is only nine or 10 years old.

Health Canada’s decision to deny people access to their genetic identity is all the more surprising given that Parliament specifically “recognized and declared” that “the health and well-being of children born through the application of assisted human reproductive technologies must be given priority in all decisions respecting their use.”

It’s clearly in the health interest of donor-conceived people to know their medical history. It’s also in their well-being to know the identity of the people whose bodies gave them life.

A British Columbia case held that genetic identity is important to offspring “both to complete their personal identities and to alleviate the stress, anxiety and frustration caused by not knowing.” It also said that without such information, these offspring experience sadness, frustration, depression and anxiety, and anxiety for their children’s well-being. (These findings of fact were not overturned on appeal.)

Health Canada offered no argument that hiding genetic identity would benefit the health and well-being of offspring. Health Canada did, however, say it would benefit industry: “the proposed amendments would resolve concerns of sperm and ova banks, including those in the United States, that the regulations could unintentionally compromise the anonymity of donors.”

Health Canada’s proposals are inconsistent with the trend in Western democracies, including in the United Kingdom and Australia, to cease using gametes from providers who seek anonymity. They’re also inconsistent with medical norms; the Canadian Medical Protective Association recommends that physicians retain minors’ medical records for 10 years from the time the minor would reach the age of majority.

Parliament’s statutes grant authority to make regulations. But the regulations must follow the statute’s limits: in this case, to put the interests of offspring first.

On international Genetic Identity Day, it’s important to underscore that the people created by assisted human reproductive technologies have health and well-being interests to know their genetic identity. Parliament has instructed Health Canada to make these interests its priority. 

Health Canada’s proposals to continue to deprive people of vital knowledge of their parentage must be reconsidered.

By Juliet Guichon,Barry Stevens and Ian Mitchell

Juliet Guichon is associate professor at Cumming School of Medicine, University of Calgary. Barry Stevens is a Toronto filmmaker who was conceived by anonymous artificial insemination. He has identified his biological father, confirmed about 30 half siblings, so far, and made two films about his search for identity. Ian Mitchell is professor of pediatrics at Cumming School of Medicine, University of Calgary.

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