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A call for boundaries

Scientists need moral guidelines, not just research objectives

A call for boundaries

He Jiankui speaks during the Human Genome Editing Conference in Hong Kong on Nov. 28. (Kin Cheung/AP)

It’s a story worthy of a tech-thriller screenplay: A brilliant young scientist cuts through red tape and brushes aside the cautions of his tradition-bound peers to perfect a life-saving technique. Under a cloak of secrecy he defies the odds and presents the world with its first gene-edited babies, twins who are immune to the ravages of AIDS.

    Or, from another perspective, an opportunistic young researcher lies to his experimental subjects, skirts the gatekeepers, forges documents, misleads authorities, and launches a PR campaign to announce his achievement—shortly before disappearing from public view. Who is this International Man of Mystery?

    He Jiankui (Ph.D., Rice University) announced at an international genetics summit in Hong Kong in November that he had successfully altered the genome of twin girls in China using the CRISPR method. CRISPR is a revolutionary technique used on lab animals since 2013 as a means of removing supposedly harmful genes from an individual’s DNA. If practiced on differentiated cells (such as those specific to liver, skin, or muscle), it will affect only the individual. But when used to alter a sperm, egg, or embryo, a CRISPR change will become a permanent part of the subject’s genome, replicated in every cell of the body and passed on to the subject’s descendants.

    This is what He Jiankui claims to have done on human subjects: extracted twin embryos with one HIV-positive parent, “snipped” the embryos’ CCR5 gene that can serve as a gateway to HIV infection, and implanted the tiny babies in an unidentified woman who gestated normally and delivered them last fall. After the fact, the young scientist stunned the world with his summit announcement and a series of YouTube videos.  

    But since he did not simultaneously publish his research in any scientific journals, conducted the entire experiment in secrecy, and followed few if any of the accepted protocols, his peers are both skeptical and furious. Ed Yong, a science correspondent for The Atlantic, lists 15 ethical and technical problems with the research. A handful of He’s peers have defended him on pragmatic grounds—if the twins grow up healthy and happy, what’s the problem? “But unethical actions are still unethical, even if nothing goes wrong,” writes Yong. “Arguing otherwise gives a pass to scientists who blow past ethical norms, provided that they find something interesting.”  

    Writing in Popular Mechanics, Jacqueline Detwiler notes, “The National Institutes of Health have been worried about this sort of thing for at least 20 years.” But no one has taken responsibility for it. Who could? Western science grew out of community, the ability to freely share information and build on previous successes. The quickest way to shut down innovation would be an ironclad “Ministry of Innovation.” Ominously, He Jiankui disappeared in early December, possibly placed under house arrest in China.

    Short of criminal activity, governments should not police science. But absent an authoritative set of guidelines, scientists who are horrified by He’s experiments can only sputter indignantly. 

    Fresh upon He’s announcement (but unrelated to it), the Trump administration unveiled an educational initiative to “promote STEM literacy” (science, technology, engineering, and math). STEM—the acronym itself—suggests something essential and foundational, and to STEM advocates that’s exactly right. Parts of the plan sound promising, such as providing more real-work experience for high-school students and sparing more resources for technical education aimed at kids who may not be college-bound. Most of the plan’s executive summary, though, has the hollow ring of boilerplate: “Preparation for the evolving workplace,” “computational thinking,” and, of course, “diversity, equity, and inclusion” scroll past the brain with familiar echoes.  

    What about moral responsibility? Not one word, in the entire 1,132-word summary.

    The abstract entity we call “science” can’t police itself, but scientists could police their own consciences if, along with their STEM classes, they learn that life is more than the evolving workplace and the body more than computational thinking, and that data are not the only tools for problem-solving. A coherent philosophy of the limits and responsibilities of science won’t stop a renegade researcher, but it could set some useful guidelines. Who will launch that initiative?

Comments

  • Laneygirl's picture
    Laneygirl
    Posted: Thu, 01/10/2019 09:04 am

    I emphatically need to remind America that there's a letter missing from STEM. Science, Technology, Engineering and Math is not at all serving "diversity, equity, and inclusion". Where is the A? We hear that Art and Music is gone from many American schools. My gifting, validation, sense of success were tied up in those classes and I would have considered the future a dismal place if I could only choose to follow the STEM path!

    Do kids even know that red and blue make purple?