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Canadian parliament must act on assisted human reproduction

7 June 2010
By Professor Jocelyn Downie
Canada Research Chair in Health Law and Policy and Professor, Faculties of Law and Medicine, Dalhousie University, Canada
Appeared in BioNews 561
In the past three months, three members of the Board of Directors of Assisted Human Reproduction Canada (AHRC) have resigned. Their resignation letters include the following statements: '[that following requests for information about the Agency's spending and budget] there was much reluctance and procrastination in providing information, and that when the information was provided, there were inconsistencies in what I received and what was originally presented. This raised concerns in my mind about the prudence and diligence in managing public funds'; 'I have encountered difficulties as a board member in receiving satisfactory replies to concerns and questions I have raised which recently included audits and contracts. What I have been witness to is a resistance to give full and straightforward answers when questions and requests for clarification were made'; and 'I am unable to fulfill the duties entrusted to me in a manner that satisfies my conscience and my integrity.'

This set of resignations is cause for serious concern and requires urgent attention from the federal Parliamentary Standing Committee on Health and Parliament itself.

The objectives of AHRC, set out in the Assisted Human Reproduction Act, are: '(a) to protect and promote the health and safety, and the human dignity and human rights, of Canadians, and (b) to foster the application of ethical principles, in relation to assisted human reproduction and other matters to which this Act applies.'

The responsibilities of the Board of AHRC are: 'the overall management of the Agency, including (a) the provision of advice to the Minister on assisted human reproduction and other matters to which this Act applies, or on any matter referred to the Agency by the Minister; (b) the approval of the Agency's goals and operational policies; (c) the approval of the Agency's budget; and (d) the evaluation of the Agency's performance.'

In other words, AHRC is tasked with oversight of the assisted human reproduction industry in Canada and the Board is tasked with oversight of AHRC and giving advice to the Minister of Health on assisted human reproduction. The Act regulates cloning, embryonic stem cell research, the buying and selling of human eggs, the payment of surrogate mothers, and the licensing of those who provide IVF services. This is a very important Agency for a number of reasons: many thousands of Canadians access assisted human reproductive technologies and services and many more are potentially affected by research conducted on gametes and embryos; all Canadians are implicated in the positions our governments take on the many ethically charged issues within assisted human reproduction; and millions of taxpayer dollars are supporting AHRC ($5.7 million last year and over $10 million projected for this year).

These resignations are cause for serious concern because they may be a signal that the Board is not capable of fulfilling its responsibilities. First, if Board members cannot get the information they require to fulfil their oversight responsibilities with respect to AHRC, then Canadians cannot be assured that AHRC is fulfilling its statutory mandate. Without full disclosure from the President, Chair and staff, how can Board members meaningfully approve operational policies? How can they meaningfully evaluate the AHRC's performance? What information were the Board members given and what were they denied?

It is interesting to note here how little meaningful information about AHRC is available to those outside the Board. The disclosures of contracts are opaque at best and not even meeting agendas and minutes are available on the website despite an explicit Board commitment to transparency and an explicit recognition that such posting is required for meaningful transparency. Contrast the transparency of AHRC at their website with the transparency of the equivalent agency in the United Kingdom at their website - the difference is nothing short of breathtaking.

Second, the Board has now lost the law, ethics, policy, and consumer experts and perspectives. The remaining members (apart from the President and the Chair) are two physicians (one a haemato-oncologist and one a medical geneticist), one business woman (a specialist in corporate communications for the biotech sector), one Chair in Jewish Studies, and one employee of the Archdiocese of Toronto. Three of the five remaining members have very publicly embraced strong pro-life positions.

The lack of expertise on the Board is exacerbated by the fact that the only entity that has been empanelled to advise the Board also lacks precisely the same expertise. The recently appointed Science Advisory Panel does not have a single law, ethics, policy, or consumer member. Such expertise and experience is absolutely essential for the oversight of AHRC. Indeed, I would argue that the Board should not be considered to be functional with such glaring gaps in expertise and experience.

Why should anyone care about any of this? Quite simply because the protection of those who use assisted human reproductive technologies and the children born of them, the ethics of our society, Canada's reputation abroad, and the use of millions of dollars of taxpayer money all rest upon the AHRC functioning, and being seen to be, functioning well. With these recent resignations, the latter is certainly not true. Given the lack of transparency of the Board, noted above, how can we know if the former is true?

It is time for the federal Standing Committee on Health to exercise its oversight role and call the President, the Chair of the Board, and Board Members to answer questions raised by this wave of resignations. It is also past time for a comprehensive Parliamentary review. The Assisted Human Reproduction Act itself mandated a 'comprehensive review of the provisions and operation of this Act...within three years after the coming into force of section 21 [January 12, 2006].' According to the Act, this review should have been completed by January 2009 and been reported by January 2010. It is clearly time for Parliament and the Standing Committee on Health to act. All Canadians, especially the many women and children directly affected by assisted human reproductive technologies, deserve nothing less.

SOURCES & REFERENCES
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