How to Ethically Modify the DNA of Humans

"While each nation ultimately has the authority to regulate activities under its jurisdiction, the human genome is shared among all nations."

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Dec 4 2015, 12:00pm

Image: Umberto Nicoletti/Flickr

For the last three days, some of the world's leading geneticists and bioethicists have more or less locked themselves in a room in Washington DC with the express purpose of determining whether humans should use genome editing tools on themselves. Thursday, they released a statement that could help guide the genetically modified future of our species.

There is widespread interest in using CRISPR, which allows the targeted editing of specific genes, to potentially end genetic disease in humans. There's also interest among transhumanists and others interested in improving the genetic makeup of the human race to use the technology to make us live longer, age slower, and otherwise enhance the experience of being a human.

The statement, signed by officials from the Chinese Academy of Sciences and top researchers from the United Kingdom, Germany, and the United States, and released by the National Academy of Science is the clearest ethical statement yet made on the subject. That doesn't mean we've got any more statutory or regulatory clarity on the issue of modifying human DNA using tools such as CRISPR, which allow targeted edits to certain genes.

"Once introduced into the human population, genetic alterations would be difficult to remove and would not remain within any single community or country"

"These techniques are already in broad use in biomedical research," the group wrote. "They may also enable wide-ranging clinical applications in medicine. At the same time, the prospect of human genome editing raises many important scientific, ethical, and societal questions."

The statement, adopted at the International Summit on Human Gene Editing, doesn't have any force of law, but it will and should be considered by lawmakers and regulators around the world as they attempt to tackle the moral and ethical issues associated with genetic manipulation.

So with that caveat out of the way, the broad strokes of the statement basically implore the human race (looking at you, Chinese scientists who have already tried to use CRISPR on human embryos) to please not fuck itself up before we actually know what we're doing.

"While each nation ultimately has the authority to regulate activities under its jurisdiction, the human genome is shared among all nations," the group wrote. "The international community should strive to establish norms concerning acceptable uses of human germline editing and to harmonize regulations, in order to discourage unacceptable activities while advancing human health and welfare."

"Permanent genetic 'enhancements' to subsets of the population could exacerbate social inequities or be used coercively"

Specifically, the community doesn't want a few bad apples around the world to screw up and create genetically modified humans that have, say, novel diseases or mutations not seen in the wild. That's a legitimate concern, but equally concerning is the very real possibility that we do manage to improve the human race using CRISPR—but that in the beginning, the modifications are so expensive that only the rich can afford them, creating an upper class of biologically superior super humans (who then pass their modified genes to their children). Seriously.

The summit's organizers came to the conclusion that germline editing, which can be passed on to the next generation, would be "irresponsible" at the present considering that there are "safety and efficacy issues," a lack of understanding on "balancing of risks, potential benefits, and alternatives," and no clear consensus on the "appropriateness" of germline editing. The potential issues cited are quite heavy:

"Germline editing poses many important issues, including:
(i) the risks of inaccurate editing (such as off-target mutations) and incomplete editing of the cells of early-stage embryos (mosaicism)
(ii) the difficulty of predicting harmful effects that genetic changes may have under the wide range of circumstances experienced by the human population, including interactions with other genetic variants and with the environment
(iii) the obligation to consider implications for both the individual and the future generations who will carry the genetic alterations
(iv) the fact that, once introduced into the human population, genetic alterations would be difficult to remove and would not remain within any single community or country
(v) the possibility that permanent genetic 'enhancements' to subsets of the population could exacerbate social inequities or be used coercively
(vi) the moral and ethical considerations in purposefully altering human evolution using this technology."

This statement may seem to suggest that, if our scientific institutions prevail, we won't be editing humans anytime soon. That's not necessarily the case.

The group decided that it is acceptable to edit human embryos and germline cells for the purpose of basic and preclinical research, so long as those embryos are not used to make a woman pregnant. It also determined that there is a clear and possibly safe path forward for somatic cell editing in adults, which would allow users to edit the DNA in particular body cells to fix or enhance them—like correcting sickle-cell anemia in blood cells, for instance—without passing the modified genes on to the next generation.

"Because proposed clinical uses are intended to affect only the individual who receives them, they can be appropriately and rigorously evaluated within existing and evolving regulatory frameworks for gene therapy, and regulators can weigh risks and potential benefits in approving clinical trials and therapies," the group wrote.

No one is expecting this summit to be the end of the conversation about human genome editing. Even basic research on human genome editing is likely to be something that religious-minded lawmakers in the United States will vehemently oppose. But before this summit, there was no real international consensus among scientists about how to move forward. We've now got a starting point, at the very least.