Genetic engineering should be tightly controlled by stringent regulations – and should focus on treating disease, not enhancing the human species, according to a new report by a government oversight committee.
“Human Genome Editing: Science, Ethics and Governance” was published by the National Academy of Science this week, a work in progress for two years.
The Committee on Human Gene Editing recommended a series of general values: transparency, well-being of people, fairness, and responsible science, in this age of manipulating DNA.
The need to be careful is pressing, especially since the advent of CRISPR/Cas9, now already six years old, said the group of doctors, professors, researchers and bioethicists.
“A number of ethical, legal, and social questions surrounding gene therapy and human reproductive medicine provide a backdrop for consideration of key issues related to genome editing,” the Committee writes. “Because such technologies as CRISPR/Cas9 have made genome editing so efficient and precise, they have opened up possible applications that have until now been viewed as largely theoretical.”
But genetic editing has several different applications, some which are getting wider acceptance, while others are still strictly taboo among the international community.
The Committee recommends:
- Gene therapy, which entails making changes to somatic cells, should continue to proceed. However, it should also continue to be governed by “ethical norms” as far as it goes. At the same time “no single standard… can be defined at this time.”
- “Germline editing” and the heritable changes that can be wrought by changing DNA should be handled very cautiously, the group added. Research should only be conducted for compelling reasons, amid, a rigid set of criteria, and under strict oversight.
- “Enhancement” for the sake of “enhancement” should not be considered, they added.
“Using genome editing to improve musculature for patients with muscular dystrophy would be considered a restorative treatment, whereas… using the technology to increase someone’s muscle strength to the extreme end of human capacity (or beyond) would almost certainly be considered enhancement,” they write.
Currently, germline editing is not allowed in the U.S., mostly due to a prohibition against using federal funds for human-embryo science.
But the Committee's repsonse is not exactly novel, said Arthur Caplan, the director of the Division of Medical Ethics at New York University Langone Medical Center, in an interview with Laboratory Equipment. Caplan has argued for years that human gene editing was inevitable - and the promises of treating disease were too great to completely stop it based on fears of the future.
"The conclusions of this report were predictable and inevitable," said Caplan.
"Setting up a roadblock because you fear where the road could lead makes no sense," he added. "The here-and-now of treating disease outweight the worries of the future, and the fear of eugenics... You really just have to watch it on a case-by-case basis."
Indeed, the questions the group tackled are not entirely new. For instance, the Asilomar Conference held in 1975 set guidelines for experiments using recombinant DNA, a then-new technique for manipulating genes.
The authors of the new report acknowledge that not all the consequences can be foreseen, in the years, or even months, to come. Talks must be ongoing through all the future breakthroughs, they added.
"Some questions science can answer, some it cannot," said Dietram Scheufele, a professor of life sciences communication at UW-Madison. "As a result, public debates about human gene editing need to be absolutely transparent and they need to be inclusive."