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Therapeutics or Eugenics? Next steps in Gene Editing

A landmark international meeting took place in Washington on December 1 – 3 in which scientists, ethicists, policymakers, and others discussed the promises and risks of using powerful new tools to edit human genes. While these tools, particularly CRISPR-Cas9, raise hopes of curing genetic diseases, they also pose ethical concerns, including the prospect of eugenics. The International Summit on Human Gene Editing reached three conclusions on how use of gene editing should proceed for now.

Key conclusions. The most controversial aspect of gene editing is its use on human germline cells (sperm and eggs cells and embryos) because whatever genetic changes are made could be inherited in perpetuity. They might also be used to create a baby with enhanced traits, which could then be passed down to future generations. The organizing committee for the gene editing summit reached two conclusions on the use of gene editing on human germline cells:

  • Basic and preclinical research could proceed using gene editing to understand the biology of human embryos and germline cells, but the modified cells should not be used to establish a pregnancy.
  • No clinical research or therapy with human germline editing should be done at this time because of questions about safety and benefits. The committee specifically cited “the possibility that permanent genetic ‘enhancements’ to subsets of the population could exacerbate social inequities or be used coercively” and the ethical considerations in “purposefully altering human evolution using this technology.” But the committee left open the possibility that such research might occur in the future, stating that “as scientific knowledge advances and societal views evolve, the clinical use of germline editing should be revisited on a regular basis.”

The committee also concluded that clinical use of gene editing could go forward on somatic cells, those whose genomes are not passed down. “Examples that have been proposed include editing genes for sickle-cell anemia in blood cells or for improving the ability of immune cells to target cancer,” the committee said. This year, gene editing was used for the first time on immune cells to treat a baby with incurable leukemia.

What about eugenics?In principle, gene editing “could be used to edit in some enhancements such as muscles of greater strength or bones of greater length,” writes Erik Parens, a senior research scholar at The Hastings Center, inAeon. “Whatever the traits, once the fig leaves of safety and efficacy fall away and we have a technology that can alter the traits of future generations, the naked ethical question stares back at us: is eugenics, really, inherently bad?”

Even if the answer is yes, banning germline editing to create children with enhancements presents other ethical questions. “The argument here is that prospective parents should be the ones to decide whether and how to create a child that best fits their desires,” writes Josephine Johnston, The Hastings Center’s director of research, inStat News. While she hopes that parents would not choose to use gene editing to enhance their children, she says it would be difficult to ban the practice “because doing so would restrict both parental rights and reproductive freedom.”

News in context. The International Summit on Human Gene Editing came about after leading biologists made front-page news last spring by calling for a moratorium on editing the human genome and, soon after, Chinese scientists reported the world’s first genetic modification of human embryos. Though the embryos were not viable and, therefore, could not result in a pregnancy, the research nonetheless heightened ethical concerns and pointed to the need for international guidance on responsible use of gene editing. The summit was co-hosted by the U.S. National Academy of Sciences, U.S. National Academy of Medicine, the Royal Society in the U.K., and the Chinese Academy of Sciences. The National Academy of Sciences and the National Academy of Medicine have launched a consensus study to examine human gene editing in depth; the study committee is expected to issue policy recommendations for gene editing in 2016.