Bill C-6, the Assisted Human Reproduction Act

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Senate Standing Committee on Social Affairs, Science and Technology

March 3, 2004
Ottawa, Ontario

Jennifer Stoddart
Privacy Commissioner of Canada

(Check against delivery)

Thank you for inviting me to comment on this important and highly sensitive legislation that attempts, after many years of debate, to address a number of issues related to the use of assisted human reproductive technologies. In appearing before you today, I am very aware of the long history of this legislation and of the extensive discussions and consultations that shaped the legislation.

The Assisted Human Reproduction Act raises challenging legal, moral, medical and ethical issues. It's not surprising, given the highly sensitive nature of the issues addressed in the Bill, that Canadians disagree strongly about the legislation. And I am certainly aware that this Committee has heard from several eminent witnesses who have raised competing, yet valid concerns about many of the provisions in the Bill.

The subject is complex and so too is Bill C-6. Part of the complexity, and part of the controversy surrounding the Bill, relates to the federal government's use of its criminal law power to prohibit and regulate certain reproductive technologies. This, though, is one of the several difficult issues that this Committee has to address that falls outside our mandate.

To begin, I want to be very clear about where our Office's expertise and mandate lie. Privacy Issues, broadly defined, arise with respect to several aspects of the legislation. However, the Privacy Act and the Personal Information Protection and Electronic Documents Act (PIPEDA) regulate informational privacy. Our comments on this Bill are therefore restricted to the provisions dealing with the protection of the personal information collected as part of the assisted human reproductive process and the oversight regime that will govern it.

Under this Bill, clinics, physicians and other licensed facilities providing reproductive services would be required to collect highly sensitive "health reporting information" and provide it to the proposed Assisted Human Reproduction Agency, which will fall under the responsibility of the Minister of Health. This information will relate to people donating reproductive material, people making use of reproductive techniques and, indirectly, to the offspring of these processes.

If the donors and the individuals who use these reproductive techniques do not feel confident that this health reporting information is adequately protected, they almost certainly will not participate. I don't think it is an exaggeration to suggest that the success of the regime will depend on the policies and procedures that are put in place to protect this information.

On the whole, we are satisfied with the measures that are being proposed. The legislation imposes certain responsibilities on the Assisted Human Reproduction Agency. Creating this arm's length agency to oversee the licensed facilities and to hold personal health information is a good first step — it segregates this information from Health Canada's other responsibilities.

The Bill has specific provisions dealing with the protection of personal information as set out in sections 14 to 19. Licensees are required to inform individuals how their information will be used, when it will be disclosed and how it will be protected. Written consent is required, except for specified disclosures. It provides for access and correction rights, and has provisions dealing with the destruction of personal information. And it requires licensees to inform individuals, in writing, of these requirements. On the whole, we think these are good provisions.

We have carefully examined the legislation in terms of oversight. We are satisfied that the proposed Assisted Human Reproduction Agency would be subject to the Privacy Act and thus to the oversight of my Office. The Office of the Privacy Commissioner will also have oversight, under the PIPEDA, over the collection, use and disclosure of personal information by licensed facilities engaged in commercial activities, except in those provinces that have passed substantially similar legislation. As well, provincial health information protection legislation, where it exists, will provide an added measure of protection.

The privacy principles set out in Bill C-6 seem, on their face, to be adequate. The challenge for Health Canada, the Agency and the licensed facilities will be putting these principles into practice.

In particular, it will be absolutely critical that the licensed facilities do a good job of explaining to individuals how their personal information will be used, how it will be protected, when and to whom it will be disclosed and how they can complain if they believe that their privacy rights had been violated. And the Agency will need to have the expertise to ensure that the licensees abide by the requirements of the legislation.

There are two matters of substance that I want to raise at this point. One relates to the question of whether the name of the donor of reproductive material should be disclosed to the offspring without consent. The other concerns regulation-making authority. Let me deal with the donor name issue first.

Our right to privacy is multi-faceted and it is based on tradition, social norms, the law, and international conventions, to cite a few sources. The notion of consent is central to privacy. By exercising our right to grant or withhold consent we can attempt to control who has access to information about us and for what purposes.

We also have a limited right to obtain information about ourselves. This right flows in part from our rights as citizens. More recently, legislation such as PIPEDA has given us a right to obtain information held about us by private sector organizations. In these areas we have recognized a right to obtain information about ourselves and enshrined this right as one of the fair information principles. This right is not universal; in other areas of our lives we cannot compel organizations or individuals to give us this information.

In our view, this legislation strikes the right balance on this contentious issue. We agree that donors should have the right to control access to their identities, except in specific circumstances that raise health or safety concerns. Disregarding this fundamental privacy principle would result in fewer people donating reproductive material, possibly because they would be concerned about being held financially responsible for their offspring. As well, this conforms with adoption norms in Canada that generally require the consent of the biological parents to disclosure of their names.

Without knowing the identity of the donor, offspring can still obtain a great deal of important knowledge from the donor's health reporting information as set out in subsection 18(3) — this could include everything from the donor's medical history to his or her eye colour. Furthermore, the Bill does not preclude the offspring from ever being able to know the identity of the donor. It simply makes it dependent on the donor's consent.

The second point we want to raise involves regulation-making authority. Subsection 65(1) gives the Governor in Council the authority to make regulations on a number of matters, some of which touch on the collection, use and disclosure of health reporting information. As I mentioned earlier, the success of this regime will depend on how it is implemented by Health Canada and the Agency. Many of the details of how the Agency will function will be set out in regulations.

However, Bill C-6 makes the normal regulation-making process more transparent and open. Section 66 requires that all proposed regulations shall be laid before both the House and the Senate for detailed study and that the Minister of Health will be required to explain why any recommendations resulting from Parliament's review are not incorporated in the regulation. We fully support this provision because of the broad regulation-making authority in the legislation and because it respects the authority of Parliament. This is an excellent model that that we would like to see followed in all privacy sensitive legislation.

Thank you for giving me this opportunity to share my views with you.

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