Gene ‘editing’ ethics questioned for human reproduction

As scientists gather Tuesday to discuss the possibilities — and ethics — of “editing” human genes, advocacy groups are urging them to ban the practice if it involves human reproduction.

At issue are new technologies that empower scientists to hunt for and find specific genetic markers and then “edit” them — i.e., delete, insert or replace them.

The technologies already have been used in agriculture and animals, but in April Chinese researchers at Sun Yat-sen University published a paper on their work with nonviable human embryos.

That news prompted the National Institutes of Health to say it would not fund any research into genome editing of human embryos.

It also galvanized efforts to craft an international consensus report on how to handle this emerging dimension of genetic science.

Beginning Tuesday some 500 scientists, scholars, ethicists and policymakers from 20 countries are gathering in Washington for an international summit on human gene editing.

The U.S. National Academy of Sciences, the U.S. National Academy of Medicine, the Chinese Academy of Sciences and the United Kingdom’s Royal Society are hosting the three-day summit through Thursday. The goal is to produce a consensus report by the end of 2016.

Genome editing has excited scientists for its potential to benefit the world, such as altering insects’ ability to carry malaria or dengue fever, making crops hardier and correcting genetic defects in animals.

It also is viewed as a way to one day disrupt or recode human genes that cause illnesses like Huntington’s disease, sickle-cell anemia, cystic fibrosis and possibly even cancer and dementia.

The questions are about where to set boundaries, identify what is safe and decide what is ethical — especially since altering a group of cells called the germ line would affect all descendants.

Groups like the Center for Genetics and Society are urging scientists to just say no to gene editing in human embryos and reproductive cells.

“The controversy about germ line gene editing often downplays important points, including that we have other ways to avoid transmitting serious genetic diseases to future generations,” said Marcy Darnovsky, the center’s executive director and a speaker on a summit panel Tuesday afternoon.

Others have warned of a future in which people use gene editing to “design” their children’s physical characteristics, revive eugenics-style reproduction to target “undesirable” types of people and create partially human creatures to provide organs for human transplant.

“We are at a critical juncture in genetic research,” the National Academies of Sciences, Engineering and Medicine said in an explanation about its efforts to provide an international consensus study of human gene editing.

Its study is expected to examine the clinical, ethical, legal and social implications of the new technologies, offer advice to Congress and other U.S. leaders and provide a framework for guidelines that other countries can use.

Among the summit’s speakers: John P. Holdren, director of the White House Office of Science and Technology Policy; Jennifer A. Doudna, professor of biochemistry and molecular biology at University of California, Berkeley; Emmanuelle Charpentier, director at the Max Planck Institute of Infection Biology in Berlin; and Feng Zhang, professor of biomedical engineering at the Broad Institute of Harvard University and the Massachusetts Institute of Technology.

Ms. Doudna, Ms. Charpentier and Mr. Zhang are known for their roles in developing genome-editing techniques.