Unproven Stem Cell Procedures

On October 27, 2017 the Stem Cell Networked supported a workshop on Unproven Stem Cell Procedures: Not the cure-all elixir of the 21st Century – Exploring ways to reduce potential harm. This event brought together a variety of actors from across the sector – patients, policy experts, academics, communicators and clinic owners.  A summary of the issue and the event has been drafted while the full paper is in development. It can be read below.

Stem cell research is an exciting field of science, because stem cells have the unique property to give rise to all cells and tissues in our body. Researchers are using stem cells to understand how human biology works and apply this knowledge in developing new and improved treatments for various diseases. However, stem cell research is also very complex and there is much to learn about how to safely and effectively control stem cell-based treatments before they will be ready for routine clinical use. Despite the early stage of much of this research, the excitement about the great promise of stem cells in regenerative medicine has helped fuel the growth of a private market for stem cell treatments that have not been proven to be safe or effective. Clinics offering a wide range of stem cell interventions can be found in countries around the world. They typically market their services directly to patients on-line through websites and social media. A few simple Google searches will produce a long list of clinics offering a wide variety of stem cell-based therapies for a sometimes dizzying array of health conditions, and often at high cost. Reports of harms to people who have pursued these unproven treatments evidence that these treatments are not without risk. Despite various efforts made by regulatory institutions to restrict and/or control this market, the private market for stem cell-based interventions has been growing in countries that have fairly strong regulations, including Australia, the United States and Canada, which raises some important questions and policy tensions.

In a one-day workshop held this past October and funded by the Stem Cell Network, invited participants from several key stakeholder groups came together to consider potential policy responses to the growing stem cell private market, with a focus on the Canadian context. Participants included experts in law, policy and ethics, stem cell researchers and clinicians, government representatives and regulators, individuals with media experience, a provider offering private market stem cell treatments, patients and patient advocates. The day included a series of short presentations followed by group discussions focused around three key themes, including: the state of stem cell science and clinical tensions, the private market for stem cell-based interventions and policy options, and patient voices and priorities.

The discussions were highly engaging and covered a range of valuable considerations. Participants discussed topics such as the important roles and different facets of patient priorities, perspectives and motivations, balancing hope with realistic expectations. In addition, conversations on regulatory tensions and responsibilities, clinical innovation, data and evidence gathering and assessment were also explored. A forthcoming paper will present the key themes emerging from this workshop and provide recommendations regarding future policy priorities. Once the paper is complete and published the Stem Cell Network will make it available on its website.