JEF AKSTShortly after 8:00 this morning, more than two dozen people filled the small conference room at the National Academies’ Keck Center as the Committee on Human Gene Editing convened for the fourth time since it was assembled last year. The committee’s task: to research, discuss, and report on “the scientific underpinnings of human gene-editing technologies, their potential use in biomedical research and medicine—including human germline editing—and the clinical, ethical, legal, and social implications of their use.” Today, we were to hear talks on the history of different racial groups’ regard for science, medicine, and genetics, and historical and ethical perspectives on the editing of the human germline to treat genetic disorders, in particular those that strike people of certain ethnic backgrounds more frequently than others.
The committee, composed of 22 members from eight countries, first began its investigation last year at the Human Gene Editing Summit, which attracted top-notch scientists from around the world, including the heavy hitters in the development of the CRISPR/Cas9 technology for precision gene editing. The group met twice earlier in the year, and a completed report is due out by the end of 2016.
“We haven’t come to conclusions yet and that’s why we’re having this meeting,” committee cochair Richard Hynes of MIT said in his opening remarks to the room. “We’re looking for a robust discussion. We will subsequently continue to debate these issues.”
First up was National Institutes of Health (NIH) Director Francis Collins, who provided a run-down of existing regulations and how further discussions might inform future guidelines. Collins emphasized that he was a strong supporter of CRISPR/Cas9 technology being used for somatic cell gene editing for therapeutic purposes, referring to the University of Pennsylvania proposal recently approved by an NIH advisory panel. “The fact that CRISPR/Cas is finding its way into gene-editing protocols is something to celebrate,” he said. “We want to see that kind of application go forward as quickly as is feasible.”
He cautioned against the use of the technology for enabling genetic enhancements, but didn’t dismiss the idea out of hand. “Not all enhancement is futuristic,” he noted. “Not all of it is bad.” But “designer babies with precisely predictable phenotypes? Never,” he said. “We have to be aware of the hubris it would take for human beings to be so smart that we thought we had the ability and the ethical principles to do such a thing.”
Following the committee’s Q&A session with Collins, others’ talks covered ethical considerations for uses of the technology ranging from basic genetic testing for heritable disorders to germline editing. Columbia University’s Alondra Nelson described experiences that have bred distrust of biomedical research among African Americans, from the infamous Tuskegee syphilis study to the more recent example of New York City medical researchers recruiting black and Latino boys (whose older brothers had had run-ins with law enforcement) to receive treatments that would boost levels of serotonin, which was thought to be associated with aggressive behaviors. Princeton’s Keith Wailoo discussed the cases of identifying mutations underlying Tay-Sachs disease, sickle cell trait, and cystic fibrosis, all diseases that affect certain ethnic groups at higher rates. In such cases, genetic testing can lead to harmful stigma, Wailoo noted.
“If you create a new disease category, or even if you create a new genetic marker that suggests [a new] disease category, we are creating new social identities and new social groups,” Nelson said during a Q&A session. “And the threat of stigma always comes with that.”
Throughout the morning, speakers also raised the question of access to gene-editing treatments. As Erik Parens of the Hastings Center said during his talk, “Given the world as we know it, germline genetic enhancement could exacerbate the already obscene gap between the ‘haves’ and the ‘have nots.’ We need to intensify our public conversation about old ethical concerns like exacerbating inequality.”