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Informing stem cell policy through research

The Stem Cell Network extends research support beyond the lab. Since its inception, it has allocated funding to projects focused on ethical, legal and social implications (ELSI) relevant to stem cell research and its translation.

These projects impact science policy in Canada and examine concerns such as stem cell tourism, informed consent, stem cell banking, embryonic stem cells, patents and commercialization. Because effective policy requires input from those who are doing the research, SCN brings scientists and legal/ethical experts together in formal ways to work and learn from each other. This integrated approach ensures that SCN’s policy community is providing necessary insights that reflect today’s science and anticipate tomorrow’s advances.

Over the years, critical policy recommendations have emerged from SCN’s ELSI projects. Here are some of the outcomes that these projects have helped inform, and the key experts involved.

Assisted Human Reproduction Act (AHRA)

Before 2004, there were few policies or research guidelines in Canada that addressed stem cell use, specifically the use of embryonic stem cells. Credible, research-based evidence was urgently needed to inform policy discussions on balancing moral and religious views with the needs of researchers and people seeking treatment for injury and disease.

To overcome this challenge, SCN brought together scientists, legal scholars and policy-makers to share their insights, which resulted in informed government legislation and research guidelines implemented by national research funders, such as the Canadian Institutes of Health Research (CIHR). That evidence and expertise also informed the Assisted Human Reproduction Act in 2004. Approximately 20% of SCN’s network members appeared as witnesses at the draft and committee stages of the AHRA. In addition, SCN provided briefing materials to every MP and Senator, and held informational workshops on Parliament Hill.

In 2016-17 the Stem Cell Network provided support for members of its policy community to hold a series of workshops focused on genetic reproductive technologies relevant to the federal Assisted Human Reproduction Act (AHRA). In November 2017, Bartha Knoppers, from the Centre of Genomics and Policy, presented a report at the annual Till & McCulloch meetings. The policy paper and recommendations do not represent the official policy or position of the Stem Cell Network. Rather, it is an output generated to inform policy development in relation to updates to the AHRA.

2017 Consensus Statement

Stem Cell Tourism/Unproven Stem Cell Therapies

While stem cell therapies hold much promise, many are still being tested for safety and efficacy. This means that there are very few stem cell therapies offered in the clinic by medical professionals as the standard of care. Despite this, clinics worldwide advertise treatments to people in Canada who are seeking cures for disease or illness. Travelling to another country to undergo an experimental treatment (stem cell tourism) can be expensive, ineffective and even dangerous.  However, when faced with life-threatening disease, many want the ‘right to try’ an experimental or unproven treatment.  The ethics of this are significant and it is an issue that members of SCN’s policy research community are working on. To read more about “right to try” arguments click here.

Not all unproven stem cell therapies are aimed at those with disease.  Many clinics are offering anti-aging treatments, or other products meant to enhance physical appearance, activity or mobility. In many cases, celebrities and professional athletes are known to promote and market these types of treatments. Research shows that the public trusts celebrity spokespeople and can be taken in by persuasive marketing campaigns.

SCN Policy researchers, Timothy Caulfield (University of Alberta), Ubaka Ogbogu (University of Alberta) and Amy Zarzeczny (University of Regina) work with international counterparts to grasp the implications of stem cell tourism, to promote better regulation and accreditation, and to separate facts from false claims.

Learn more about stem cell tourism in this SCN video, narrated by Professor Timothy Caulfield.

Cord Blood Bank

Umbilical cord blood is a proven rich source of stem cells that can be used to treat more than 80 diseases and disorders. Because of their versatility, cord blood stem cells play a vital role in research and therapies. Collecting cord blood after birth poses no risk to healthy mothers and infants, should parents wish to make a donation.

SCN acted as a catalyst for a national strategy on cord blood management. Topics addressed in this strategy include privacy, consent, confidentiality and ownership, standardized donation procedures, and private vs. public banking. As a result of this strategy, the Canadian Blood Services officially launched Canada’s Cord Blood Bank in 2015.

Learn more about donating cord blood to the Cord Blood Bank here.

StemGen Database

Stem cell research is constantly evolving, and so is the policy related to the research and resulting therapies and technologies. Keeping track of the many documents and laws surrounding international best practices in stem cell research is important if we are to craft useful, up-to-date policy.

To help scientists and policy-makers stay on top of worldwide developments in this area, SCN-funded researchers developed StemGen, a free internet database that gathers international policy documents on stem cell ethics, gene therapy, cloning, and relevant laws and policies from over 50 countries. StemGen’s information helps scientists around the world design ethical experiments and guides policy-makers in their own design of governance frameworks.