In 2018, we campaigned for improvements to Health Canada’s proposed regulations under the Assisted Human Reproduction Act.
Health Canada developed draft regulations to help update (Section 8, consent) and implement parts (Sections 10, 12, 45-58) of the Assisted Human Reproduction Act. (Scroll to the bottom of the page for links to all of the key documents.)
The objectives of the proposed regulations, as stated in Health Canada documents, are as follows:
“This regulatory proposal would assist in reducing the risks of health and safety that may arise from using donor sperm and ova for the purpose of AHR, including the risk of disease transmission. It would also provide clarity to stakeholders on the allowable reimbursements for certain expenditures involved in AHR, help maintain donor anonymity for persons who choose to donate on the basis of anonymity, and set out procedures and requirements regarding measures related to seized or forfeited information and material.”
The Principles of the Assisted Human Reproduction Act are enshrined in Section 2, and these principles are supposed to underpin all of the regulations that follow. Section 2(a) states that:
(a) 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
We are glad to see that this piece of the regulations remains unchanged, although we do not feel that this principle is reflected in the proposed regulations.
The following sections detail the changes that we want to see to the regulations and to the practices of donor conception more broadly:
Ban donor anonymity
The proposed regulations aim to offer more protection for the anonymity of donors. While we understand that this is intended to close an existing loophole in the existing donor documentation process, the focus of the Canadian government on protecting anonymity for donors is regressive and goes against the trend toward abolishing donor anonymity around the world. It also ignores the reality that donor anonymity is effectively over due to the rising popularity of direct-to-consumer DNA testing.
Offering more protection for the anonymity of donors is troubling on several counts: (1) In a recent survey, the majority of donor-conceived people were firmly opposed to anonymous sperm and egg donation. There have been several academic studies that have echoed the same results. (2) We believe that it is wrong to purposely create people who are denied knowledge about their medical, cultural and genetic identity. (3) We also believe that it is wrong for a government, doctor, private business or organization to withhold personal information about a person from that person. (4) The right to know one’s identity is also enshrined in the UN Convention on the Rights of the Child, to which Canada is a signatory. (5) Furthermore, the claim that the fertility industry can offer anonymity to sperm and ova donors is deceitful. With the explosion of consumer DNA testing it has become relatively easy for most donor-conceived people to identify their biological parent(s) (sperm / egg / embryo donors), even if the donors themselves never have their DNA tested. We want to see Health Canada and the fertility industry formally recognize that “anonymous” gamete donation should no longer be offered or promised to prospective sperm and egg donors.
Expand donor health screening
While we support the development of testing and screening requirements to ensure donor sperm and eggs are screened for certain infectious diseases and serious genetic diseases, we do not think the screening criteria go far enough.
There is a need for even more screening criteria and disease screening in order to protect the long-term health and well-being of donor conceived people. Additional criteria should include screening for mental health (e.g. history of schizophrenia) and additional potentially-heritable health risks (e.g. Alzheimer’s, kidney disease, early onset cancers, diabetes).
In addition, donors should be required to keep health records updated in the event that they develop new medical conditions after donating, such as schizophrenia or early onset cancers. Many donors who provide gametes do so when they are young, before they are aware that they may be carriers of serious health conditions.
3. Require longer record keeping
We support the proposal that establishments will now be required to keep records regarding donor conception, but the proposed regulations would have primary establishments keep donor sperm or egg records for a mere 10 years. This is woefully inadequate for ensuring the protection of the health and well-being of donor-conceived people.
Under this proposed regulation the donor conceived person will have no way of knowing the medical history of the donor if the recipient parents have not retained the records, or if the donor-conceived person only finds out the truth about his or her conception after the age of 10 years old. By contrast, Germany requires records to be kept for 110 years — we believe this should be the requirement in Canada as well, especially given that gametes can be frozen for long periods of time.
Quebec’s 2008 legal challenge to the AHRA quashed plans for a stand-alone national donor registry. Provincial donor registries should be mandated and this information should be searchable through a Canada-wide system. This would ensure that records are kept if establishments shut down, and that records would be easily accessed by donor-conceived people. There should be no minimum age limit on when donor-conceived people can access these records.
4. Update terminology about donor-conceived people
The proposed regulations consistently use the term “donor-conceived child(ren)” when referring to the people produced through Assisted Human Reproduction. While it is correct that AHR initially produces children, the use of this word infantilizes the rights and interests of donor-conceived adults. Considering the health and well-being of donor-conceived adults raises additional concerns, such as how to facilitate contact between siblings conceived by the same donor and protect donor-conceived adults from accidentally having romantic relationship with genetic half-siblings.
We want to see all instances of “donor-conceived child” and “children” to “donor-conceived person” or “people” throughout the Assisted Human Reproduction Act.
Set limit on the number of donor conceived people created per donor
DCAC calls on Health Canada to include in the legislation a legal limit for the number of offspring that can be created from a single donor. Currently there are no limits (only recommendations) in Canada or the United States for the number of offspring per donor, so donor-conceived people can end up with dozens or even hundreds of siblings. Xytex sperm bank, for example, will supply up to 60 families worldwide with sperm from the same donor and multiple children can be conceived from the same donor within a family; rumours are circulating that Xytex is now increasing the family limit to 80. This is not only disconcerting — it also raises the risk of accidental incest.
Add information about donor conception to birth certificates
Donor-conceived people have the right to know that they were donor-conceived. A “donor-conceived” annotation should be added to long-form and short-form birth certificates to make it more likely that donor-conceived people will know the truth about their conception. While not specifically within the jurisdiction of Health Canada, reform is required in this area to avoid the negative health impacts on donor-conceived people from lack of parental disclosure and deception by the state.
For more information about the regulations:
Health Canada has produced a “Guidance Document” to provide their interpretation of the proposed regulations, and shared the results from their public consultation held in 2017, which helped to inform the current draft regulations.
Links to the complete documents from Health Canada: