Members of the Hinxton Group, international experts in science, bioethics, law and science policy, as well as research funders and journal editors, have gathered in Manchester, England, to discuss the use of genetic modification technologies.


“Until now, however, we have not had the technological tools that define a viable path to realizing this possibility. There was little reason to be concerned about the application of such technology due to the absence of the technology itself and the policy barriers to human application,” meeting briefing materials state.


Now of course, the landscape has changed. Discovery and development of the CRISPR/Cas-9 and similar technologies have made genetic modification easier and more efficient. This puts once theoretical modification of the human germline, or the DNA of sex cells that affect the traits of future generations, well within the realm of possibility.


The group of over 30 is meeting over two days to address the scientific, ethical and regulatory challenges posed by new genetic modification technologies –including an express focus on the prospect of human germline genetic modification — with the aim of developing policy recommendations.


This is timely, as the United States’ National Academy of Medicine and National Academy of Sciences has recently formed an advisory group to study and advise policymakers on the issues; the committee includes researcher Jennifer Doudna, a co-developer of the CRISPR technology and a leading voice in the examination of its future use, as well as Diane Griffin, professor of Molecular Microbiology and Immunology at the Johns Hopkins Bloomberg School of Public Health.


Additionally, just this week the five leading funders of biomedical research in the UK issued a statement calling for discussion of genome editing in embryos and germ cells among “biomedical and social scientists, ethicists, healthcare professionals, research funders, regulators, affected patients and their families, and the wider public,” among others, and clear guidelines “demarcating research use of genome editing from potential clinical use, and carefully distinguishing use of somatic and germ cells, will ensure that the research community remains at the forefront of this novel area”. Representatives from the Wellcome Trust, one of the signatories on the statement, are attending the Hinxton Group meeting.


At this point concerns, especially among the public, are broad and vague, which the experts of the Hinxton Group and the advisory group in the United States will work to articulate and focus for a path forward. The obvious benefits of avoiding diseases that have long plagued humankind are counterbalanced by fantastic fears of life imitating science fiction, “designer babies,” and more subtle concerns that will hopefully emerge from careful expert consideration as well as public engagement.


Jonathan Montgomery, Chair of the Nuffield Council on Bioethics, writes in a letter to The Guardian, “this kind of discussion can no longer take place only among scientists, however well-informed or well-intentioned they are. It is a discussion that must engage society much more widely…”


Michael Hanlon writes in The Telegraph, “Fixing ‘faulty’ genes may, like all treatments, carry side effects. Conventional gene therapy is not without risk; but gene therapy whose risks are made apparent two, or three generations down the line would be a whole different ball game. A patient can consent to treatment; her great-great grandchildren cannot.”


The Hinxton Group meeting in Manchester was organized by Prof. Debra Mathews, Prof. Ruth Faden, Alan Regenberg and an international steering committee comprised of experts in stem cell science and bioethics, along with staff of the Johns Hopkins Berman Institute of Bioethics. Prof. Mathews is a trained geneticist and is dedicated to building effective bridges between scientists and ethicists. In speaking on another recent genetic modification debate – mitochondrial transfer IVF, resulting in so-called “three-parent” babies – she echoed both the concerns of the wary and the hope of researchers during an interview with Voice of Russia:


“One of the reasons it is controversial is that you would be modifying the genetics of future generations who do not have the ability to make a decision about it,” Mathews said. However, “If we stop a particular avenue of science in its track and say ‘this may not go forward,’ we don’t know what the opportunity cost is… We may think what we’re doing is preventing this particular application that we’re quite concerned about, which may be a legitimate concern, but we sometimes fail to realize there may be opportunity costs with not allowing that science to move forward.”


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Leah Ramsay

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