CRISPR — Who’s in Charge? (Part I)

August 31, 2016 • Posted in Blog

D. Joy Riley, M.D., M.A.
Executive Director

This is part I of our report. View part IIpart III, or part IV.

The ability to edit genes using CRISPR (clustered regularly interspaced short palindromic repeats) has been in the news for more than a year. A committee has been appointed to advise our government regarding the editing of genes, particularly editing the genes of the human embryo.

Who are the members of that committee? What are their views? The Tennessee Center for Bioethics & Culture has been working to gather information for you, our readers. This is part I of our report.

On 16 June 2015, Victor J. Dzau, President of the National Academy of Medicine (the new name of the Institute of Medicine as of 1 July 2015), spoke to the Subcommittee on Research and Technology, Committee on Science, Space, and Technology, U.S. House of Representatives about:

the important matter of human gene editing and the major initiative we have launched to help guide decision making in this area. The Academies have an established track record of providing leadership in emerging and often controversial areas of genetic research. Our initiative is marshalling the best available expertise to help you and the nation obtain a thorough understanding of gene editing and its potential benefits and risks, which will provide a solid foundation for informed decisions and sound policies on this research.

. . . Research that attempts to alter human genes raises important questions about safety, uncertainties, risks, and ethical considerations. Of particular concern is the potential to make permanent modifications to human DNA in the nuclei of cells in eggs, sperm, or human embryos that are then passed down to succeeding generations. This is known as human germline editing.

Dzau announced further that the “Academies will appoint an expert committee to conduct a comprehensive study on human gene-editing research. Like all of our committees, this study committee will represent a wide range of expertise and be carefully screened for bias and conflict of interest.”

That committee was appointed, has been conducting meetings, and plans a final report before the end of this calendar year. The committee comprises 22 individuals, and a brief look at some of their research and views regarding their understanding and attitudes toward early human life–including human genetic modification (for example, gene-editing), use of embryos and/or fetuses in research, embryonic stem cell research, human-animal chimeras, and abortion–seems a reasonable endeavor. After all, it stands to reason that how one approaches the human embryo/fetus in general will be a harbinger of whether or not one will approve human gene editing.

Here is a brief look at some of the writings and organizational involvement of the committee members. We begin with the first five (alphabetically listed):

R. Alta Charo, J.D. (Co-Chair)
University of Wisconsin-Madison

  • 2005 appointee to the ethics standards working group of the California Institute for Regenerative Medicine
  • Co-chair of the National Academies’ Human Embryonic Stem Cell Research Advisory Committee
  • 2015 — “We have a duty to use fetal tissue for research and therapy.”

Richard O. Hynes, Ph.D. (Co-Chair)
Massachusetts Institute of Technology

  • Co-chair of the National Academies’ Human Embryonic Stem Cell Research Advisory Committee
  • Board of Governors, the Wellcome Trust, UK
  • Fellow, Royal Society (UK)

David W. Beier, J.D.
Bay City Capital

Positions held include:

  • Member, California Healthcare Institute Board, 1979 to 1989 — Counsel to the U.S. House Judiciary Committee
  • Chief Domestic Policy Adviser to Vice President Al Gore
  • Vice President for Government Affairs and Policy — Genentech

Juan Carlos Izpisua Belmonte, Ph.D.
Salk Institute for Biological Studies

Ellen Wright Clayton, M.D., J.D.
Vanderbilt University

  • Gene editing: Institute of Medicine — Member, Committee on Human Gene Editing: Scientific, Medical and Ethical Considerations
  • Genomics: Principal Investigator, LawSeqSM — “a 3-year project to clarify current law, address gaps, and generate the forward-looking recommendations needed to create the legal foundation for successfully translating genomics into clinical care”
  • Cloning: Testified against a cloning ban in Tennessee, House Subcommittee, 2005
  • Abortion:

Part II of this report will be forthcoming. . . stay tuned!

Action Points

1) Talk with your neighbors over the back fence during the upcoming holiday, and exchange your views. Contact your legislator to inform him or her about your opinion regarding human embryo gene-editing, or submit an op-ed to your local newspaper about your concerns.

2) On a related note, the NIH is proposing taxpayer-funded human-animal chimera research. The comment period is open through Tuesday, 6 September.


As of 14 February 2017, the National Academy of Sciences and the National Academy of Medicine released a report that indicates “clinical trials for genome editing of the human germline – adding, removing, or replacing DNA base pairs in gametes or early embryos – could be permitted in the future, but only for serious conditions under stringent oversight.” See the press release here.