ISSCR Global Science Advocacy: Your Voice for Policies Affecting Stem Cell Research
I have long believed that one of the most valuable benefits of your membership is the opportunity to leverage the expertise of the global stem cell and regenerative medicine community to help ensure that legislative and regulatory policies support responsible research and discovery in our field. A substantial amount of scientific research is funded through national or government investment, therefore these policies can have a significant impact on biomedical research and the pursuit of new therapeutics to treat disease. Ensuring the stream of funding remains healthy and that we consistently build understanding for the complex research and potential of stem cells and regenerative medicine to improve human health is essential to advance stem cell research.
The ISSCR brings together 4,000 researchers, clinicians, and stem cell professionals from around the world to collectively inform policymakers and advocate for science-based decision-making in public policy. The ISSCR’s advocacy work supports your stem cell research and strives to ensure that new discoveries continue to move forward, and each voice is important. During ISSCR 2020 Virtual, I recall George Daley who is the Dean of Harvard Medical School and also a past ISSCR president sharing his personal journey with advocacy. “What I’ve learned and is my strong conviction, is that as scientists we have a personal responsibility to be educators and advocates for the common good and this will necessarily entail interacting with policymakers, the media, and the public.” I could not agree more, and the Society works to harness those voices to affect change.
Restrictions on Fetal Tissue Research
Recently, the ISSCR advocated for the value of fetal tissue research and opposed the blatant imbalance of a newly formed NIH Human Fetal Tissue Ethics Advisory Board tasked with evaluating research proposals that use the material. The Society led efforts from a coalition of scientific and patient organizations in support of this vital research and made strong statements urging that the US Department of Health and Human Services (HHS) reject the recommendations of the Board, which blocked all but one of the 14 proposals in a process dominated by special interests that oppose the research. The ISSCR’s advocacy and media strategy led to significant coverage of our members’ position in major media outlets including The New York Times, The Washington Post, and Science. Not only does this reinforce the Society and our members as a leading voice on this topic, but helps to ensure that as policies are debated on fetal tissue research in the future, the ISSCR is part of those conversations representing your interests. While this is a largely a US advocacy issue, the Society strives to vocally oppose policies seeking to restrict fetal tissue research as a matter of precedent and to reinforce its value to biomedical research. As ISSCR Policy Committee Chair Sean Morrison reminded us at the Science Advocacy and Communications Seminar during ISSCR 2020 Virtual, “we need to relentlessly remind policymakers of the facts and to steer the process toward effective policies that facilitate good science and protect us from bad science.”
Human Genome Editing
The ISSCR leverages opportunities to offer counsel on emerging issues in stem cell research and regenerative medicine as part of the Society’s commitment to the self-regulation of science and Guidelines that impose standards for all stages of stem cell research and its translation to the clinic. For example, as the World Health Organization (WHO) Expert Advisory Committee embarked on revising its draft framework, the ISSCR offered recommendations to ensure that genome editing technologies are adequately evaluated by regulators and proven safe and effective before being marketed to patients.
The Society also has recognized the important role that the European Medicine Agency and national regulators have with overseeing the development of new products and offered recommendations to ensure that new products are proven safe and effective before being marketed to patients. That includes balancing the safety and needs of patients with conditional authorization, prioritizing robust surveillance and oversight, and dedicating resources to prevent the premature commercialization of stem cell-based products and other regenerative medicines. During the Advocacy Seminar, ISSCR Lawrence Goldstein Policy Fellow Mohamed Abou El-Enein reflected on working collaboratively with regulators in Europe. He went on to stress that communication with regulators was important for shaping guidelines on how to address modern technologies. Building these strong relationships is essential, particularly as our field evolves.
Support for Biomedical Research Funding
In addition to issues specific to the stem cell and regenerative medicine field, the ISSCR joins with the larger scientific community to advocate for consistent increases in biomedical research funding. Recent efforts include the Society’s statement in response to proposed €5 billion cut to the Horizon Europe budget that would curtail European competitiveness in research and science and impede innovation. The ISSCR also works in coalition to urge lawmakers to make research funding for National Institutes of Health (NIH) a priority.
Awareness for Unproven and Unapproved “Treatments”
The ISSCR leverages opportunities to caution against clinics that offer unproven and unapproved “treatments” to patients for a variety of conditions and that use high-pressure marketing tactics that overpromise and misrepresent safety and effectiveness of their products. Not only did the Society issue a strong statement about the marketing of unapproved stem cell-based interventions for COVID-19, the ISSCR also has urged the European Medicines Agency (EMA) and the US Food and Drug Administration (FDA) to enforce its existing regulation of those clinics. The Society’s consistent and strong stance on this topic has been represented as well in media stories that seek to inform the public including in STAT News and London Daily Mail and Los Angeles Times.
The ISSCR is your steadfast champion on public policy issues worldwide that impact stem cell research advocate to ensure that sound, science-based policies to ensure your research is able to advance to support discoveries that may transform human health.