It is hard enough that any person ever goes through cancer. But compounding that difficult circumstance is that the life-saving treatment options can render those with cancer infertile.
Fortunately, there are fertility preservation options available including removing and freezing egg and sperm. The frozen specimens can later be thawed and used to start a family. However, these options are not always possible or suitable for children.
New techniques are being explored that present alternatives to freezing eggs and sperm. Essentially, a piece of ovary or testicle is removed from the pre-pubescent patient and frozen prior to cancer treatment. If and when the patient later wishes to start a family the tissue would be transplanted back and hopefully help initiate production of sperm or egg. There has been some international success using this method. But the technique requires more research, especially with respect to its uses in minors. In Canada, however, it is being questioned whether or not such research involving minors is even legal.
According to the Assisted Human Reproduction Act, it is legal to obtain sperm or egg from a child under 18. But the Act is clear that the only permitted uses of the sperm or egg are:
(a) To preserve the sperm or egg, and
(b) To subsequently create a human being that will be raised by the child (when he or she is an adult).
It is therefore illegal to use sperm or egg retrieved from a minor for any other purpose, including research.
With respect to obtaining ovarian or testicular tissue of minors, the Act is silent. It therefore appears that obtaining tissue and performing research on those specimens might be possible. But other legal issues then arise.
While mentally capable adults may choose to participate in research for the benefit of the greater good, the same is not necessarily true when consenting to research on behalf of another person. Most minors lack the mental capacity to make their own medical decisions, particularly complex decisions involving fertility and research participation.
In Ontario, parents making health care decisions for their children are governed by the Health Care Consent Act, 1996 (HCCA). Though it governs treatment decisions, the HCCA explicitly states that it does not affect the law relating to giving or refusing consent on another person’s behalf to “a procedure whose primary purpose is research”. In other words, it is up to the provincial legislator to draft laws governing consent to research on another person’s behalf. Unfortunately, no law was ever drafted and the case law (that is, the law emerging from judges’ decisions) also does not sufficiently fill the gap. Thus, in Ontario we are left in somewhat of a legal gray zone.
To make matters more confusing, the law surrounding consent to research differs by province. Even in the provinces that do have some clarity around consent to research on behalf of another person, such as B.C., the law is still less than clear when it comes to research involving minors and/or prohibits removal of tissue from a living person for research purposes.
This patchwork of legislation can make it very difficult to assess whether or not it is legal for parents to consent to research that is necessary to move these promising techniques forward.
In a landmark 1986 decision involving the sterilization of a young woman with significant capacity issues, the Supreme Court of Canada stated that “[s]terilization should never be authorized for non‑therapeutic purposes”. While sterilization is virtually the opposite of what these techniques seek to achieve, the case nonetheless raises an important point – should parents be allowed to consent to a procedure that is non-therapeutic for the patient?
Obtaining and storing tissue has at most a marginally therapeutic benefit (arguably offering peace of mind as the patient gets older), but the research itself has no therapeutic benefit (and yet is necessary to advance the technology). Another relevant consideration is that removing and storing the tissue could have potentially harmful effects because the patient could later feel pressure to conceive after his or her parents invested so much time and money into fertility preservation efforts.
The risk of proceeding with research on the basis of parental consent is that the consent may not be valid. Performing a medical procedure, such as removal of tissue, without proper consent can constitute battery (a criminal act). It can also lead to civil liability on the part of the health care practitioners involved.
The sad reality is that this legal paralysis might rob today’s children of their chance to become parents in the future.
Lisa Feldstein is the principal lawyer at Lisa Feldstein Law Office Professional Corporation. She holds a B.A. from the University of Guelph and a J.D. from Osgoode Hall Law School. Lisa practices in the area of Family Health Law(tm). Lisa has been teaching negotiation at Osgoode Hall Law School since 2010 and sits as director on the board of BALANCE for Blind Adults.