CRISPR — Who’s in Charge? (Part III)

October 29, 2016 • Posted in Blog

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

This is part III of our report. View part Ipart II, 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.

Here is a brief look at some of the writings and organizational involvement of the committee members. We continue this month with the third set of five members (alphabetically listed):

Robin Lovell-Badge, Ph.D.
The Francis Crick Institute

  • Gene editing: Lindzi Wessel has an extensive interview of Embryologist Robin Lovell-Badge available at the University of California, Santa Cruz website. Here is an excerpt of that interview:

    Do you use CRISPR-Cas9 in your research?

    Absolutely, yes. As soon as it became obvious that this was an easy-to-use technique, we started using it. It’s been incredibly valuable for our own research, which is mostly in mice. It’s been very powerful.

    What does CRISPR bring to gene editing that we didn’t have before?
    The CRISPR-Cas9 methods are simple to use, quick, precise and very efficient. They make the change [in a gene] just where you want it. They are also inexpensive and can be used in seemingly any species.

    Is there any chance your research would be affected by the international regulatory questions being discussed today?
    I’m not doing any work with human embryos at the moment. I wasn’t doing any anyway, but I had to promise that I wouldn’t for this year because I’m on this National Academies study committee.

    There’s been a lot of international debate about editing genes in human embryos. What are some possible reasons to do this research?
    By manipulating the genes using gene editing, you can see which pathways are important in embryonic development. Most of what we know about early mammalian embryos comes from studies in the mouse. People have realized that there are many differences in the activity of genes in human and mouse embryos, and some of those differences are in genes which we know are essential in embryonic development. That means we don’t really understand much about how early human embryos develop at all. Just being able to study these early events might actually reveal critical things about many different aspects of health.

    When it comes to the potential for using gene editing to treat disease, you mentioned Huntington’s disease as one good candidate. What makes a good candidate for potential treatment by CRISPR?
    For people who know there’s a risk of having a child with a genetic disease, like Huntington’s, there’s already a technique called preimplantation genetic diagnosis (PGD). You do [in-vitro fertilization] and then test the early embryo to see if that embryo is likely have the disease. Then, in theory, you only transfer the disease-free embryo back into the mother. But there are some individuals for whom that method either would be very inefficient or won’t work at all. There are rare individuals [with genetic mutations that would cause all of their children to have Huntington’s]. If they wanted to have their own genetic child, then the only way would be to correct the genetic defect. That would be an ideal case for using the gene editing methods of CRISPR-Cas9.

  • Embryonic Stem Cells: Dr. Lovell-Badge is Head of the Division of Stem Cell Biology and Developmental Genetics at the MRC National Institute for Medical Research in London, UK. His research group is interested in how stem cells differentiate into the specialized cells of the testis or ovary during embryonic development. The group also studies stem cell types, including pluripotent stem cells from very early embryos (ES cells) or after reprogramming from adult cells (iPS cells), and multipotent stem cells from the developing and adult central nervous system and pituitary. (Read more.)

Gary Marchant, J.D., Ph.D.
Arizona State University

  • Gene editing: Gary Marchant, a law professor at Arizona State University, noted that uniform national regulations and requirements would assure more equal protections for citizens and discourage medical tourism (Read more.)
  • Epigenetics: “The moral imperative to act is even stronger when the intervention prevents the acquiring of deleterious transgenerational alterations and thus involves preventing their lives from being worse . . . Finally, epigenetics raises difficult questions about the obligations of society to preserve the soundness of the human genome and epigenome for the benefit of future generations. In developing a principle of intergenerational equity for the human genome and epigenome, optimum social policy lies between indifference to the health burdens of future generations and eugenic notions of manipulating heredity to improve the human condition. The ultimate policy challenge will be to move beyond the formulation of principles that recognize these aims to devising feasible strategies to achieve them.” (Marchant et al., “The Ghost in Our Genes: Legal and Ethical Implications of Epigenetics“)
  • Embryonic Stem Cells: “Perhaps even worse, for many relatively new technologies, there is no meaningful existing regulatory framework (e.g., embryonic stem cell research, artificial reproductive technologies, preimplantation genetic screening, direct-to-consumer genetic testing, new surveillance technologies, and internet privacy…” (Marchant et al., “What Does the History of Technology Regulation Teach Us about Nano Oversight?“, Journal of Law, Medicine & Ethics, Winter 2009)

Jennifer Merchant, Ph.D.
Université Panthéon-Assas II

  • Gene editing: Would encourage a public debate (read here and here)
  • Abortion: “‘Choice does not exist in a vacuum’ is the motto of the Reproductive Justice Movement. Indeed, ‘choice’ and/or privacy is a function of the intersections of race, class, sexuality and other markers of difference that affect the ability, not only for individuals, but for entire communities to make decisions and act freely. As such, linking reproductive rights to other social justice issues such as poverty, economic injustice, welfare reform, housing, and environmental justice among others is the sole manner to counteract the assaults on women and their rights by the Christian right and conservative Republicans, now and in the future.” (“The War on Women,” 22 Oct 2012)

Luigi Naldini, M.D., Ph.D.
San Raffaele Scientific Institute

Limited documentation of Dr. Naldini’s views available through our research findings.

  • Naldini has published in gene-editing and embryonic stem cell research: Lombardo A, Genovese P, Beausejour C., Colleoni S, Lee YL, Kim KA, Ando D, Urnov F, Galli C, Gregory PD, Holmes MC, Naldini L., “Gene Editing in Human Stem Cells Using Zinc Finger Nucleases and Integrase-Defective Lentiviral Vector Delivery,” Nature Biotechnology, 2007 25(11):1298-306. Epub 2007 Oct.28
  • Lombardo, Angelo and Luigi Naldini, “Genome Editing: A Tool For Research and Therapy: Targeted genome editing hits the clinic,” Nature Medicine 20, 1101-1103 (2014)

Duanqing Pei, Ph.D.
Chinese Academy of Sciences

Limited documentation of Dr. Pei’s views available in English through our research findings.

  • Professor of Stem Cell Biology, and Director General, Guangzhou Institutes of Biomedicine and Health,
    Chinese Academy of Sciences
  • Embryonic Stem Cells: Duanqing Pei, “The cell biology of embryonic stem cells,” Cell Research (2008) 18:s6. doi: 10.1038/cr.2008.96; published online 4 August 2008

Action Point

We all need to talk with our neighbors over the back fence and exchange our views. Consider contacting 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.


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.