Human genome editing research essential, claims influential Hinxton Group

10 September 2015

Research involving editing the genome of human embryos is essential to gain basic understanding of the biology of early human embryos and germ cells and should be permitted, according to one of the first global meetings to debate the controversial new techniques. 

The bold statement is published Thursday 10 September by the Hinxton Group, a global network of stem cell researchers, bioethicists, and experts on policy and scientific publishing, who met in Manchester, England last week. (1)

Head of the Laboratory of Stem Cell Biology and Developmental Genetics at the Francis Crick Institute, Robin Lovell-Badge, is a member of the Hinxton Group steering committee. 

While firmly backing the need for gene editing research, the group makes a clear distinction between research and clinical application, which they say should not be permitted at this stage. The statement reads:

"We believe that while this technology has tremendous value to basic research and enormous potential for somatic clinical uses, it is not sufficiently developed to consider human genome editing for clinical reproductive purposes at this time."

However, the group agreed that it is essential to know whether the methods could ever be used for clinical applications.

In line with the spirit of the Hinxton Group,  discussions at the meeting focused on the most contentious aspects of the new gene editing technologies, primarily the implications for not just any children born with engineered genetic modifications, but for successive generations who would inherit the genetic changes. Although other uses, notably for somatic, or non-heritable, therapies were discussed, the focus of debate was on the germline therapies, which have caused the most concern.

The consensus statement addresses these ethical concerns, with the group agreeing that, "given all safety, efficacy and governance needs are met, there may be morally acceptable uses of this technology in human reproduction, though further substantial discussion and debate will be required".

Robin Lovell-Badge, a member of the Hinxton Group steering committee and Group Leader, and head of the Laboratory of Stem Cell Biology and Developmental Genetics, said:

"Much of our knowledge of early development comes from studies of mouse embryos, yet it is becoming clear that gene activity and even some cell types are very different in human embryos. Genome editing techniques could be used to ask how cell types are specified in the early embryo and the nature and importance of the genes involved. Understanding gained could lead to improvements in IVF and reduced implantation failure, using treatments that do not involve genome editing."

John Harris, Professor of Bioethics at Manchester University and a member of Hinxton Group steering committee, said:

"Some argue that because we have PGD we do not need to use genome editing.  However, this new technology may constitute an improvement and allow more to benefit. This is simply progress. We humans are always looking to improve on what has gone before".

The Group were able to make a number of recommendations, not only about the research, but also about regulation and governance, and the importance of continued discussions, in how far we should go and who could or should benefit.

Debra Mathews, the Assistant Director of Science Programs at the Johns Hopkins Berman Institute of Bioethics and a member of the Hinxton Group steering committee, said:

"While there is controversy and deep moral disagreement about human germline genetic modification, what is needed is not to stop all discussion, debate and research, but rather to engage with the public, policymakers and the broader scientific community, and to weigh together the potential benefits and harms of human genome editing for research and human health." 

Sarah Chan, a Hinxton Group steering committee member and a Chancellor's Fellow at the Usher Institute for Population Health Sciences and Informatics, University of Edinburgh, said:

"Genome editing technologies hold huge potential for advancing basic research and improving human health. The prospect that genome editing may one day be used to create genetically modified humans should not in itself be cause for concern, particularly where what is at stake is curing or preventing serious disease. At the same time, it is clear that such applications raise more and different issues; more research is needed, together with robust public discussion, before genome editing could proceed to reproductive clinical applications. The relevant regulatory distinction, however, should be not between using genome editing in somatic cells and using it in embryos, but between research and reproduction: whether those embryos are ever destined to be implanted.

"Restricting research because of concerns that reproductive application is premature and dangerous will ensure that it remains forever premature and dangerous, for want of better knowledge."

 

1.        Hinxton Group Statement on: Genome Editing Technologies and Human Germline Genetic Modification

This statement is the first product of an international meeting held in Manchester over two days, 3rd and 4th September, 2015, to consider many of the issues, scientific, ethical, regulatory, around human genome editing.

Planning for the meeting began about 2 years ago, when it became clear that the new technologies to alter genes, especially those employing CRISPR/Cas9, were becoming so efficient and accurate that soon it may no longer be possible to use the simple excuse that genetic modification of humans would be too difficult and unsafe. However, over the past few months there have been many calls for meetings to consider the topic and to have wide ranging, open and informed public debate. The Hinxton Group has been one of the first to consider the issues.