Standing Up for Scientific Research
The ISSCR’s support for stem cell science and the field is central to our mission, and we speak up for policies around the world that allow our work to continue and thrive. We also provide background and current understanding about stem cell science to inform decision makers about key issues affecting science and health.
Our Policy Director, Eric Anthony, regularly monitors international political and regulatory developments and works with the ISSCR Policy Committee to develop ISSCR strategies that advocate for the scientific merit of research and its important role in advancing human health.
Supporting Fetal Tissue ResearchIn the U.S., federal funding for fetal tissue research came under scrutiny in 2018 by federal agencies and Congress, after extensive lobbying by anti-abortion groups ideologically opposed to the use of this tissue. In September we wrote a letter to Congressional leadership outlining the benefits of fetal tissue research, and noting the long-standing public and bipartisan support it has enjoyed. Eric was able to secure co-signatures from 64 medical, scientific, and patient groups, amplifying our message that this research is essential to saving lives, and creating a coalition of organizations that agree.
As anti-abortion groups stepped up pressure on the administration, the Department of Health and Human Services (HHS), which funds much of the nation’s biomedical research, announced the launch of a "comprehensive review" of human fetal tissue research. Their action came after a letter from anti-abortion groups and conservative lawmakers opposed to a Food and Drug Administration (FDA) contract to supply fetal tissue for research. The contract was terminated as a result of the effort, and federal funds attached to all fetal tissue research became subject to broad review that continues today.
The ISSCR expressed concern about the review and the negative effect it would have on research currently planned and underway. In November, the HHS invited us to a “listening session” on the merits of fetal tissue research and any alternatives that might replace its important role in research. Martin Pera of The Jackson Laboratory represented the ISSCR with leaders from HHS, FDA, and NIH, describing the critical role of fetal tissue research in development of therapies to treat disease. The HHS also heard from other scientific groups, medical institutions, and patient advocates. In December, we wrote a letter to HHS co-signed by 70 organizations to explain the scientific importance of fetal tissue research and the limitations of existing alternative models.
On another front, Larry Goldstein’s article in The Hill (read widely by policy makers), Fetal Tissue Research is the Victim of Special Interest Politics, reiterated that use of this tissue has been bipartisan, and relies on agreed-upon regulatory and ethical principles.
Informing the U.S. CongressIn December a House Committee in the U.S. Congress called a hearing on "Exploring Alternatives to Fetal Tissue Research," and the ISSCR was invited to testify. Former president Sally Temple delivered oral remarks and written testimony clearly explaining how alternatives mentioned in the hearing “may be useful at times but cannot fully replace fetal tissue.” Her testimony was a powerful counter to claims of anti-abortion groups that fetal tissue research is outdated and no longer necessary. Sally drew on scientific evidence in making the case that there is currently no reliable replacement for fetal tissue as a ‘gold standard’ for understanding development and disease.
The ISSCR also testified on this issue in 2016, at a House Committee hearing on "Bioethics of Fetal Tissue Research." In that session, Larry Goldstein and Alta Charo provided assurance that reliable scientific, regulatory, and ethical frameworks underpin the use of fetal tissue in research. We reiterated the fact that the tissue would otherwise be discarded if not used for research, and that it was donated for this purpose by the informed consent of women undergoing abortion in the U.S.
Speaking Out for Stem Cell ScienceOur thanks go out to Sally Temple, Martin Pera, Larry Goldstein, Alta Charo, and other members who have been terrific advocates for science and speak with policy makers about important issues facing the field. In volunteering to speak out, they often withstand harsh questioning from policy makers more concerned with politics than science and become targets for mean-spirited attacks from ideological groups.
It isn’t always an easy choice to advocate for science, but it is an important one. By drawing on our members for scientific expertise and the most current information about stem cell science and its potential for clinical application, we have established the ISSCR as a reputable voice in the field and in policy venues around the world. When our voice is heard, on behalf of our members and the field, we make a difference in how our science is perceived and we help advance the enterprise of stem cell science. There is no more important mission for the ISSCR.
If you would like to get involved in advocating for stem cell science, please contact Eric Anthony at mailto:eanthony@isscr.org, and as always send any questions to our general email: mailto:isscr@isscr.org.
Happy 2019!
Douglas Melton
ISSCR President, 2018-2019