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Use caution when editing genes, new report advises

chromosomesNew gene-editing techniques are making it easier, cheaper and more efficient to rewrite the DNA of living organisms. But these methods -- such as CRISPR -- raise challenging questions about the ethics of editing the human genome.

To help address those questions, the National Academies of Science, Engineering and Medicine recently convened a committee of experts from around the world. One member was Stanford's Matthew Porteus, MD, PhD, whose lab is now studying how gene-editing techniques might help treat sickle cell disease, a devastating inherited blood disorder. Porteus is an author of a JAMA viewpoint, published today, that briefly describes the committee's conclusions. (The complete report, "Human Genome Editing: Science, Ethics and Governance," is also available online.)

There's an important distinction between gene editing to alleviate disease or prevent disability, which could be ethical with appropriate caution and oversight, and gene editing for "enhancement," which is likely to be unethical because it would "violate certain core principles such as respect for persons, equity, and fairness," Porteus and his co-authors write.

They also discuss the ethics of engineering genetic changes that could be passed down from one generation to the next. In the past, ethics experts have advised against ever engaging in such "heritable germline editing" in humans, and it is currently against the law in the United States and many other jurisdictions. But the committee could envision a limited set of circumstances under which such gene editing could ethically be used to prevent disease or disability, including:

• absence of reasonable alternatives
• restriction to editing genes that have been convincingly demonstrated to cause or strongly predispose to a serious disease or condition
• conversion only to gene variants that are prevalent in the population and known not to have adverse effects
• credible preclinical and clinical data on risks and potential health benefits
• ongoing, rigorous oversight during clinical trials
• comprehensive plans for long-term multigenerational follow-up
• continued reassessment of both health and societal benefits and risks, with wide-ranging, ongoing input from the public
• reliable oversight mechanisms to prevent extension to uses other than preventing a serious disease or condition.

"If these criteria cannot be met, then clinical trials should not proceed," Porteus and his co-authors write, concluding that the goal of heritable germline editing should be "healthy infants, not 'designer babies.'"

Previously: Cautious green light for CRISPR use in embryos in the U.K.; Stanford's Hank Greely weighs in, CRISPR critters and CRISPR conundrums and Stanford scientists describe stem-cell and gene-therapy advances in scientific symposium
Image by Hey Paul Studios

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