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Hastings Center Nabs Nearly $1M Templeton Grant to Study Ethics of Human Germline Gene Editing

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NEW YORK (GenomeWeb) – The Hastings Center is embarking on a major project to explore the ethical implications of gene editing in the human germline. Backed by a grant of nearly $1 million from the John Templeton Foundation, it has already begun working on several papers, to be published later this year, and will include media outreach and education for teachers.

The center, a research institute for bioethics based in Garrison, New York, is pursuing this project in parallel to efforts from the National Academy of Sciences to consider the social, ethical, and legal implications of human germline gene editing.

"We wanted to capture a group of concerns or ideas that are less about whether [germline gene editing] is safe, but how it interacts with what it means to live a good life," Josephine Johnston, director of research at the Hastings Center, told GenomeWeb. "We didn't want to repeat what [NAS] were doing, so we zeroed in on questions that wouldn't be a major part of their work. We believe it's unlikely their effort would go towards human flourishing values."

Johnston will be co-leading the effort to produce a publication and has invited around two dozen scholars from the US and around the world to consider how germline gene editing might intersect with ideas like dignity, disability rights, and hubris. The center declined to provide the exact dollar amount of the Templeton Foundation grant, but said it would be providing additional funding from its own resources.

Ideas like "human dignity" have found their way into some European policy, "but are often dismissed in the American context as irrelevant or empty," Johnston said. "We are asking whether those values are relevant [for human gene editing]. Do they have meaning? And how can we talk about them in the context of this technology?"

With recent technological advances such as CRISPR genome editing and mitochondrial replacement therapy, it is clear that scientists have the growing ability to change the genetic makeup of a human being. How this might violate closely held beliefs of various groups of people is less clear.

"The idea of what is a good life and how to live it is something core to a huge range of ethical theories," Johnston said. Aristotle, Confucius, and many religious traditions all have contributed to those ideas.

But to consider that idea in the milieu of genome editing, Johnston and her colleagues are inviting writers from around the world to weigh in with their particular expertise. Most are not experts in the technologies, but rather experts in the concerns that the center believes gene editing, especially for reproductive purposes, could raise.

"CRISPR is a case study that is part of a broader question," Johnston said. "They're engaged in the conversation, but haven't applied that knowledge to CRISPR."

Sociologists, psychologists, philosophers, physicians — the authors come from a variety of backgrounds and perspectives. A partial list includes Agata Smorgorzewska, a physician and scientists at the Rockefeller University; John Evans, a sociologist at the University of California, San Diego; Eli Adashi, a reproductive endocrinologist at Brown University; Dan Haybron, a philosophy professor at St. Louis University; Dorothy Roberts, a law and sociology professor at the University of Pennsylvania; and Jackie Leach Scully, a bioethicist at Newcastle University in the UK.

Johnston pointed to Leach Scully as a representative example of the kind of contributor the Hastings Center was looking for. "That is someone who has thought about the values at stake in the context of disability rights. She will [take] that same thinking and apply it to a different technology," Johnston said.

With a roster of experts already assembled, Johnston said she hopes to have a manuscript to submit to a publisher by the end of the year.

Meantime, the center is planning the other phases of the project. Once it finishes the publications, it will reach out to journalists at the Association of Health Care Journalists and the National Association of Science Writers in hopes that it will lead to coverage of the articles. The center has also applied to present the publication at the annual meeting of the American Association for the Advancement of Science.

Outreach won't stop with the media. A third arm of the project is developing a seminar and a professional development curriculum for science teachers, about social and ethical issues relevant to advances in genetics.

Unlike a recent project to consider the implications of noninvasive prenatal testing, it will stop short of policy recommendations. Ultimately, Johnston said, she hopes the project will come up with new language to articulate issues, which may be helpful in public conversation.

Take the phrase "playing God," which has been invoked often when talking about genetic technologies. "Academics are allergic to that phrase because they don't find it all that helpful, but there might be a different version of that," she said. Perhaps it relates to the tension between accepting the way things are, as opposed to constantly trying to change them. "What is the basis for that concern? Can we express it in ways that don't invoke religion? Is it worth raising and does it belong in policy?" she asked. 

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