More questions than answers at Gene Editing Summit

Last week, the National Academies of Science and Engineering joined forces with the Chinese Academy of Science and the Royal Society of the United Kingdom to host an International Summit on Human Gene Editing in Washington, DC. Top scholars in genetics, bioengineering, ethics, and law debated the merits of human gene editing; however consensus was far from achieved. In fact, the repeated reminders of “unknown unknowns” and references to Brave New World left participants wondering how such disparate opinions could be formed into a single set of guidelines from the summit organizing committee.

The final statement from the organizing committee, released at the conclusion of the summit, signified that this gathering would not be the place where final decisions were made. Instead, the committee used the three days of insightful perspectives to develop a framework for how information should be collected. The point of the summit was not to answer the looming questions surrounding human gene editing; rather, it was to determine what questions to ask—and of whom—in order to begin developing recommendations on how to move forward with this technology.

The mix of individuals in the room reflected the planning committee’s efforts to include—but not be limited to—the “usual” perspectives we often hear about these issues. Speakers included important insights and an excellent overview of the process of gene editing and its development in basic research labs, including input from GSA members Jennifer Doudna (UC Berkeley) and Maria Jasin (Memorial Sloan Kettering Cancer Center), GENETICS Associate Editor George Church (Harvard University), George Daley (Harvard University), Emmanuelle Charpentier (Laboratory for Molecular Infection Medicine Sweden, Helmholtz Centre for Infection Research, Medical School of Hannover, and Max Planck Institute for Infection Biology), Jonathan Weissman (UC San Francisco), and Bill Skarnes (Sanger Institute). Videos of the scientific perspectives they and others shared at the meeting can be found here, but the scientific researchers’ perspective held a common theme: basic research on human gene editing must continue if ever we are to understand the risks and advantages to applying the science for a therapeutic purpose.

There has already been a steady stream of articles on the scientific issues involved with gene editing, so this post will not focus on that, except to emphasize that gene editing is not a new topic: although the technologies continue to evolve, CRISPR-Cas9 is only the latest in a series of advancements that have made this easier to do. In addition, many in the model organism communities have led the way in not only developing these techniques, but in conducting the essential background research that can inform the consideration of the opportunities, risks, and implications of gene editing.

An especially interesting part of the summit was the opportunity for scientists to hear important philosophical and ethical perspectives from leaders across diverse social science fields—voices that they may not typically hear in their daily consumption of news and research, or interactions at conferences.

These voices were introduced in a philosophical debate on human rights and consent in the context of reproduction. John Harris (University of Manchester), vehemently argued that the rights of a future child could not be violated because he or she is not yet born; Hille Haker (Loyola University Chicago) opposed this thinking, calling for a moratorium on human germ line gene editing for at least two years citing the lack of consent of the future child. Marcy Darnovsky (Center for Genetics and Society) reminded the room of the societal implications of germ line editing, warning that parents will want to choose traits that society values most. Sharon Terry (Genetic Alliance) provided the patient perspective stating “we need hope not hype.”  With these talks, the question shifted from can we edit the human germ line to should we?

Representatives from South Africa, Nigeria, Israel, China, Germany, India, and Sweden made the realities of medical tourism clear, calling for global collaboration to inform national laws. They also stressed the importance of recognizing and respecting differences among cultural norms across nations. For example, in Israel parenting a genetically related child is considered a right that is reflected by government financed health care coverage for women to receive unlimited in vitro fertilization (IVF) to produce up to two children. In addition, most couples there agree to genetic screening. Such views could make Israeli society more amenable to a technology that could improve the outcome of IVF. Conversely, Germany has passed national legislation outlawing human germ line gene editing and attaching a five year prison sentence to its violation.

The question of how to ensure equitable access to human gene editing technology was addressed by an outstanding panel of social scientists who drew very clear lines between the introduction of new technologies and therapies and the inequitable means by which they are available to the public. Ruha Benjamin (Princeton University) saliently described existing practices as “trickle down biotechnology.” Catherine Bliss (UCSF), author of Race Decoded, closed the summit by providing the historical context of race in genomic research, serving as an all-too-appropriate bookend to the summit’s opening talks from Alta Charo (University of Wisconsin) and Daniel Kevles (Yale University) on eugenics in America and beyond.

While the Summit served as an excellent opening dialogue, it ended like many scientific experiments: with more questions to answer. Who should have been included in this conversation, but was not? How much basic research is enough to convince the public of the safety of human germ line gene editing? Can the costs of this technology be mitigated for equitable access? Is there a way to govern the use of this technology such that the blurry line between therapy and enhancement is not crossed? It is the charge of a new committee, led by Alta Charo and Richard Hynes (Massachusetts Institute of Technology) to find answers to these questions.

For now, the International Summit on Human Gene Editing planning committee urges the continuation of basic research in this area and calls human germ line editing in the clinic “irresponsible” at this time.

We welcome your opinions in the comment section below.

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