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What rules should we have for genetically editing humans?

What rules should we have for genetically editing humans Ars Technica


In the decades since learning how to splice DNA, scientists have anxiously debated the ethics and ramifications of editing the genetic blueprints of humans—from the moral quagmires of eugenics and made-to-order babies to more nuanced uses in basic research and disease treatments. Do scientists understand enough of human biology to safely become life’s editors? Should researchers be able to edit unviable human embryos for research? If altered genes are heritable, does that infringe on the rights of the next generation? If scientists have the genetic capabilities to cure a disease, do they have an obligation to do it?

There are a lot of questions and huge differences in opinion within the research community. Regulations also vary wildly across the globe, with some countries instituting bans on certain practices and others embracing engineering. But amid the long-smoldering debate, new technology that makes it extremely easy to edit human cells, including germ-line cells (eggs and sperm), has brought theoretical uses closer to reality, reigniting concerns.

On Tuesday, hundreds of researchers from across the globe gathered in Washington, DC for a three-day summit aimed at hashing out the issues of editing human genes. The summit, co-hosted by the US National Academy of Sciences, US National Academy of Medicine, Chinese Academy of Sciences, and the UK's Royal Society, is the start of a larger effort by the US National Academies to come up with a consensus study on the use of editing technology. The Academies expect to release the report in 2016.

The goal right now, many scientists told Ars, is to simply air all of the perspectives and try to identify points of agreement and lingering controversies. “I’m interested to hear what people all over the world are thinking about,” Dana Carroll, a biochemist at the University of Utah, told Ars in an event leading up to the summit. He admits, though, that it would be a surprise if someone came up with a new argument that the scientific community hadn’t heard before.

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There are no new arguments but there are also no good answers to the current ethical questions.

Gene-editing techniques, a subset of methods for genetic engineering, generally work by using enzymatic shears to snip specific sequences of double-stranded DNA. With help from a cell’s natural DNA-repair processes, the technology then fixes the break. This can result in disrupted, disabled genes at the spot of the snip or in the insertion of new patches of DNA that can include engineered genes. Such techniques include Zinc finger nucleases (ZFNs), Transcription activator-like effector nucleases (TALENs), and the latest tool, Clustered regularly interspaced short palindromic repeats (CRISPR/Cas system). The CRISPR system in particular is extremely efficient at snipping specific spots and is really easy for researchers to use, Carroll said. And researchers are continually making it better—adding new tweaks that keep it from cutting the wrong spot.

Collectively, the technology offers researchers the potential to create clinical therapies that could easily shut off a single mutated gene that may lead to disease. Or it could allow researchers to patch an extra gene into a human genome that could recover crippled cells. It offers benefits to lab experiments as well, allowing scientists to knock out or alter specific genes to help figure out what they do. Researchers are looking into using gene editing in germ-line cells, stem cells, and others, to treat problems ranging from infertility to blood disorders.

While many applications seem scientifically and clinically exciting, some have quickly veered toward the uncomfortable. In April, a Chinese research group reported using CRISPR/Cas system to edit the genomes of human embryos to try to prevent a fatal blood disorder. The embryos were not viable, meaning they could not result in a live birth, thus eliminating the potential for edited genes to be passed into a human lineage. But the research sparked criticism and renewed concern for the ethical use of such powerful genetic tools.

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