Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies; NPR, November 28, 2018

Rob Stein, NPR; Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies

"University of Wisconsin bioethicist Alta Charo, who helped organize the summit, issued an even harsher critique of He's work, calling it "misguided, premature, unnecessary and largely useless."

"The children were already at virtually no risk of contracting HIV, because it was the father and not the mother who was infected," she said.

"The patients were given a consent form that falsely stated this was an AIDS vaccine trial, and which conflated research with therapy by claiming they were 'likely' to benefit," Charo said. "In fact there is not only very little chance these babies would be in need of a benefit, given their low risk, but there is no way to evaluate if this indeed conferred any benefit."

She spoke after Harvard Medical School Dean George Daley alluded to He's claims as "missteps" that he worried might set back a highly promising field of research. "Scientists who go rogue carry a deep, deep cost to the scientific community," Daley said.

Still, Daley argued that He's experiment shouldn't tar the potential work of other scientists. "Just because the first steps into a new technology are missteps, doesn't mean we shouldn't step back, restart and think about a plausible and responsible path forward," Daley said.

"The fact that the first instance came forward as a misstep should in no way leave us to stick our heads in the sand and not consider the very, very positive efforts that could come forward," Daley said. "I hope we just don't stick our heads in the sand."

Daley stressed that the world hadn't yet reached a scientific consensus on how to ethically and safely use new gene-editing techniques to modify embryos that become babies.

But Daley argued that a consensus was emerging that "if we can solve the scientific challenges, it may be a moral imperative that it should be permitted." The most likely first legitimate use of gene-edited embryos would be to prevent serious genetic disorders for which there are no alternatives, Daley said.

"Solving and assessing these deep issues [is] essential," Daley says.

Daley also defended the fact that scientists have long relied on self-regulation to prevent the abuse of new technologies. He's claims represented "a major failure" that called for much stronger regulation and possibly a moratorium on such research, Daley said. "I do think the principle of self-regulation is defensible.""

Ethics panel blocks proposed Zika vaccine research; STAT, February 28, 2017

Helen Branswell, STAT; Ethics panel blocks proposed Zika vaccine research

"A federally appointed ethics panel has rejected an application from a team of scientists to deliberately infect people with the Zika virus, a decision that threatens to further slow the search for an effective vaccine.

The panel’s report, published without fanfare last week on the website of the National Institutes of Health, said it would not currently be ethical to conduct the study because of the risk to potential volunteers and their sexual partners and because there are other possible study approaches.

It is not uncommon for researchers to deliberately infect study participants with viruses in the course of vaccine research. So-called “human challenge studies” allow scientists to assess a vaccine’s effectiveness more quickly than by traditional means."

Henrietta Lacks’s family wants compensation for her cells; Washington Post, February 14, 2017

Andrea K. McDaniels, Washington Post; Henrietta Lacks’s family wants compensation for her cells

"Francis Lanasa, the attorney who will represent the family, said that he would use a “continuing tort” argument, alleging that Hopkins had continued to violate the “personal rights, privacy and body parts” of Henrietta Lacks over time.

“They are literally the foundation of modern medical science,” Lanasa said of the cells."