A researcher at Southern University of Science and Technology in Shenzhen, China, recently startled the biological world by announcing the birth of twin girls whose germlines had been edited to resist HIV. The researcher, He Jiankui, had exploited the new CRISPR molecular technology that emerged in genomics around 2012.
Although not all biologists are convinced of the scientist’s claim and it remains to be seen how successful his experiment turns out to be, the dominant reaction here in the United States was orchestrated public outrage in which biologists were joined by bioethicists in condemning his work on ethical grounds.
Though this outrage may be justified, the focus is not. Moving forward, Americans need to wake up to the fact that this technology exists, and germline gene editing will happen whether we want it to or not. The only issues now are how to proceed and how the international community wants to regulate it.
Outrage of the gene editing by some reached a new high when, in an editorial in the respected journal Science, the presidents of the U.S. Academies of Science and Medicine joined the president of the Chinese Academy of Science in condemning He. The three presidents called for international experts and stakeholders to immediately develop standards for regulating germline editing.
These standards would be welcome, but all this outrage toward the individual researcher’s work is disingenuous on two grounds. First, there are as yet no rules that He violated. That is why experts should be convened to establish standards. Moreover, ethicists have been debating human germline modification for a generation.
Although only a minority endorse genetic enhancement of desirable human traits such as physical and intellectual abilities, a majority support the eventual use of germline modification to combat disease just as He has attempted. Successful germline editing could constitute the biggest breakthrough yet to eliminate genetic diseases that have no cure, such as cystic fibrosis or muscular dystrophy. But this is a frontier that needs at least some regulation.
The Science editorial also ignores the fact that, in response to the advancement of the new molecular technology, in 2007 a U.S. Academies of Science and Medicine report did not call for a ban on human germline editing. However, it recommended limiting both somatic cell and germline gene editing to prevent disease. This is exactly what He has claimed to have done. So, why should the chorus of disapproval be directed at him rather than the authors of the report?
Scientists and lawmakers have themselves partially to blame as well. Standards regulating human germline editing should long have been in place because its eventual feasibility has been fully recognized since the 1980s. That’s when the Human Genome Project was proposed and debated. Its proponents realized that the technologies generated would have many socially relevant outcomes.
Consequently, a full 3 percent of the project’s massive budget was dedicated to a program to study ethical, legal and social implications. The present situation shows that this program did not accomplish what it was supposed to do: prepare us for the results of genomics and its societal uses. This is a collective failure of the research community and should also not be blamed on He.
What needs immediate public attention is the development of guidelines to regulate human germline intervention such as restricting it to diseases caused by single genes that do not have a good medical intervention. But for the time being, there appears to be a consensus that genetic enhancement should not be attempted. That allows a narrower focus on gene therapy to combat diseases.
Should we permit modification of the human germline to eliminate genetic diseases? If so, which diseases and who decides? These are not questions that should be left entirely to scientists. They should be discussed by the broader public affected by these choices.
Sahotra Sarkar is a professor of philosophy and integrative biology at The University of Texas at Austin.
A version of this op-ed appeared in The Hill.
