The Governance gap in assisted human reproduction

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Publication Date: 
Mon, 2013-12-02

By Alana Cattapan, Margrit Eichler & Lorna Weir

Eighteen feminist scholars and activists met on Friday, April 26, 2013 in Toronto to discuss the governance of assisted human reproduction (AHR) in Canada. Alana Cattapan, Margrit Eichler & Lorna Weir (the authors of this article) co-organized and participated in the interdisciplinary workshop which provided a forum for discussions about the state of Canadian public policy on assisted reproduction and an opportunity to consider strategies for change. The intent was not to produce consensus, but to engage in a frank and free discussion of issues that were identified as important by all. The following article describes the issues addressed and the recommendations for change.


Assisted human reproduction (AHR) refers to a wide range of approaches to helping people conceive children without sexual intercourse. Practices range from relatively simple techniques like artificial insemination to more technically complicated ones, like in vitro fertilization. Assisted human reproduction is a controversial subject due to the social and ethical issues raised by these techniques, which also include surrogacy, egg and sperm donation and prenatal genetic diagnosis.  

When a public dialogue on assisted human reproduction first emerged in Canada in the 1980s, it was informed by a strong feminist presence. Workshop participants agreed that feminist perspectives in this area have been marginalized, if not eliminated, from the policy discussion, which is now turning from the federal to provincial arenas after the Supreme Court of Canada, responding to a legal challenge by the government of Quebec, suspended parts of the federal Assisted Human Reproduction Act. Many workshop participants felt that the governance situation is now worse than it was prior to the report of the Royal Commission on New Reproductive Technologies (1993). After decades of women’s health advocacy there is little to show, and what remains in terms of public governance is a widely contested federal criminal law. In contrast, a thriving private, for-profit fertility industry that lacks adequate public oversight has come into existence.

Four panelists provided an overview of selected aspects of AHR in Canada today (see summaries below), identifying areas of mutual concern as well as other issues where there was less agreement. Participants agreed that the governance of assisted human reproduction in Canada is currently insufficient in a number of ways and that action is sorely needed.

Areas of mutual concern

From the outset, workshop participants agreed that more coordinated, sustained and diverse feminist interventions in the governance of assisted human reproduction are needed. If this does not occur provincial policies on this topic will develop without the necessary commitments to inclusive feminist input and strong advocacy for women’s health needs.

An inclusive and diverse feminist presence is needed in all areas of policy, and assisted human reproduction is no exception. AHR policy needs to take seriously the impact of class, race, ability, sexual orientation and gender identity in terms of access to and experience of AHR services. However, during the workshop a full analysis of AHR governance and the issues that intersect with it was not possible given the limits of a relatively small group during a single-day event.

Participants were concerned with the lack of data tracing the long-term effects of assisted human reproduction. There is a dearth of available information about the health outcomes of people using and born from assisted human reproduction, and while some research has been done in recent years, much more is needed. For example, participants agreed that more research on egg providers is essential, including the collection of clear data about the number of egg retrievals women undergo, their fertility in subsequent years, the number of eggs retrieved, and both short-term and long-term illness, mortality and other harms. This information is not available now.

Although there was no consensus on the role of provincial governments in the regulation of assisted reproductive technologies, participants agreed on the need for coordinated oversight from the provinces, at least with respect to data collection. Clinics, governments, and researchers need to collect data and ensure the independent and publicly available analysis of information to answer the many questions that remain about the current uses and future outcomes of assisted human reproduction.  

The lack of independent research is closely tied to participants' concerns about women’s health. The current focus on assisted human reproduction, and particularly the Assisted Human Reproduction Act, has eclipsed a focus on primary prevention of infertility, and women’s health is no longer a central priority in the policies related to assisted human reproduction. Women’s health needs, including primary prevention policies, must be made more central to continuing discussions of assisted human reproduction and must include health issues related to social status (e.g., workplace exposures with negative effects on fertility and child health) within and outside of Canada.

At the same time assisted human reproduction is more than a matter of women’s health, and its implications go beyond addressing infertility. Participants expressed concern about the emphasis on infertility in the context of the nuclear, heterosexual family and the idea that biological children represent the most desirable form of family. The participants challenged assumptions about biology, sexuality and gender identity too-often apparent in discussions of assisted human reproduction and agreed that feminist perspectives could offer a broader understanding of family building wherein adoption, assisted reproduction, and other ways of forming kin relations throughout the life cycle would be recognized as equally valuable.  

Participants also agreed that family law and issues of parentage need consideration and reform. There is a pressing need for laws to recognize family structures that include three or more parents which reflect kin relatedness beyond the nuclear heterosexual family. Feminist legal scholars are developing a proposal for a legal regime that would protect LGBTQ families in relation to assisted human reproduction, including the protection of families with more than two parents. In addition, current practices for recording vital statistics/registering births do not reflect the reality of many families using assisted human reproduction, including the possibility of making a clear distinction between parents and gamete providers. Birth certificates, for instance, are not designed to record the parentage of children carried by surrogate mothers or those conceived using donated genetic material such as sperm. 

“Fertility Inc.”—the economic complex linking fertility clinics and the pharmaceutical and medical technology industries—was also a concern. Commercial secrecy has made it difficult to access information about the growing private AHR industry. Access to for-profit fertility clinics is determined by the ability to pay, screening out those who lack funds. Fertility Inc. is also associated with a semi-legal and sometimes illegal-but-tolerated market in reproductive tissues. The for-profit fertility industry is resistant to advocacy for women’s and children’s health concerns. Industry resistance to the regulation of assisted human reproduction has been supported by the inaction of the federal government, which here, as elsewhere, conflates public and corporate interests.

The weak standard of counselling in private fertility clinics was another common concern among participants. Many counsellors lack specialized training, and some work in a conflict-of-interest situation as they are employed by clinics that have an institutional interest in promoting medical treatments that are ultimately funded by their clients. Some participants also expressed concern regarding the role of counsellors as “gate keepers” to fertility services. 

Finally, participants identified the need to consider and promote the interests of children born of reproductive technologies as an often-overlooked aspect of the governance of assisted human reproduction. Advancing the needs of children born of reproductive technologies is critical to ethical policymaking in this area.

Areas for further discussion

While opinion converged on many issues, it diverged on others.

Participants largely agreed that there are concerns around the health outcomes of women providing their eggs for others, but they disagreed about the current ban on payment for reproductive tissues. Some saw the outright ban on payment for gestational services and egg provision as an impediment to the safe and transparent use of reproductive technologies, while others supported the ban on payment to prevent the further commercialization and commodification of human reproductive labour and tissues. Participants also spoke out about the discord between banning payment to gamete providers when “everyone else” from the clinic to the pharmaceutical industry is profiting from gamete transactions.

There was also some disagreement about the desirability of public funding for assisted human reproduction.  Some participants were opposed to social inequalities related to access, particularly for those with limited incomes or who are otherwise marginalized. Others took issue with directing limited public health funds to reproductive technologies of limited effect when provincial health care budgets/programs are already strained to cover essential services, especially when there are legitimate alternative ways of family-making (e.g., adoption) that are not paid for by the state.

While participants agreed that the interests of children born through assisted human reproduction must be central to policy making, there was disagreement about donor anonymity. Most participants agreed that children should be able to access information about their genetic and gestational parentage; however, this raised a concern about the emphasis that this would put on the place of “blood relations” in recognizing and not recognizing family members. Requiring donors to release information about their personal identities could place women and LGBTQ-led families in a position of vulnerability to unwanted legal claims to parentage. Participants generally opposed total anonymity in gamete donation, but could not collectively agree on how to move forward on this issue.  

Participants also held different opinions on the implications of an LGBTQ perspective for feminist advocacy around assisted human reproduction. Some participants noted that LGBTQ people are significant users of assisted human reproduction, although the exact participation rate has not been established. Given that LGBTQ people, particularly trans people, may not necessarily identify with the category “women,” it was suggested that a women’s health perspective on assisted human reproduction has significant limitations.  Due to the time constraints of a one-day workshop, the implications of this challenge for feminist and women’s health advocacy were not fully discussed, although participants acknowledged the critical role of LGBTQ communities in developing policy in this area.

Next steps?

The discussions led to proposals for a number of follow-up actions:

Establish and fund a “next generation” feminist research program that could begin to identify current and future research needs.

Identify allies who might share theses concerns and be willing to work with them across sectors and reach out to a broader public. Clearly identifying key issues with “elevator speeches” and fact sheets would help make the issues more accessible to potential allies.

Create a publicly accessible registry to track and provide reliable information about the use of reproductive technologies in Canada.

Ensure granting agencies support the work of feminist and LGBTQ legal scholars to investigate the operation and effects of family, criminal, tort, and other forms of law in relation to LGBTQ family formation.

Overall, the feminists who participated in the workshop agreed that the federal government is resistant to action on assisted reproduction and that existing law is insufficient to protect the interests of those using and born of reproductive technologies. With the exception of Quebec where Medicare covers up to three cycles of IVF, provincial interventions are minimal, and do not fill the void. There is also a lack of data on the effects of assisted human reproduction on women’s, LGBTQ, and children’s health and well-being. These multiple and reinforcing gaps enable the fertility industry and medical research to proceed without recognition of women’s health and without accountability to the people of Canada.

 

Alana Cattapan is a PhD Candidate in the Department of Political Science at York University. A longtime feminist researcher and activist, her research examines the impact of assisted human reproduction on women’s health.

Margrit Eichler has retired from OISE/UT and is now a full-time activist, including as President for Scientists for the Right to Know, Secretary of Science for Peace and Vice-President of the Academy for Lifelong Learning.

Lorna Weir is Professor of Sociology at York University and Adjunct Professor in the Bloomberg Faculty of Nursing at the University of Toronto. She is a longtime activist on LGBTQ and feminist issues. 


Summary of Presentations
Postdoctoral researcher in Political Science at the University of Toronto, Audrey L’Espérance, provided an overview of governance and advocacy at the provincial level, identifying the importance of framing policy in ways that address one issue at a time, as a means to ensure that policymakers will take up, and implement, policy in the field.
Freelance journalist Alison Motluk then presented her study of the experiences of egg donors in Canada, raising questions about the lack of follow-up care for egg donors, underreported rates of adverse events arising from the donation process (including ovarian hyperstimulation syndrome for which donors are sometimes hospitalized), and the lack of medical research on the long term effects of egg donation on women’s health. 
The third panelist, Karen Busby, law professor at the University of Manitoba presented an overview of her recent work on parentage and surrogacy in Canada, identifying the need for legal system reforms to better protect the interests of surrogate mothers and the children they bear. She noted that considering the clear absence of conflict between surrogate mothers and intended parents in Canada, there is a case to be made for streamlining the process by which surrogate-born children are adopted by their intended families.
Françoise Baylis, professor of medical ethics and Canada Research Chair in Bioethics and Philosophy at Dalhousie University closed the panel by describing the current legal regime regulating assisted human reproduction at the federal level, identifying the illegality of paying donors and gestational women for reproductive services, and showing that these violations of the criminal law are routinely reported in the media without any legal consequences. She argued that the failure to implement the Assisted Human Reproduction Act has been due to the lack of political will on the part of the federal government.