Who owns your cells? Legacy of Henrietta Lacks raises ethical questions about profits from medical research; Cleveland.com, August 18, 2023

Gretchen Cuda Kroen, cleveland.com; Who owns your cells? Legacy of Henrietta Lacks raises ethical questions about profits from medical research

"While the legal victory may have given the family some closure, it has raised concerns for bioethicists in Cleveland and elsewhere.

The case raises important questions about owning one’s own body; whether individuals are entitled to a share of the profits from medical discoveries derived from research on their own cells, organs and genetic material.

But it also offers a tremendous opportunity to not only acknowledge the ethical failures of the past and the seeds of mistrust they have sown, but to guide society toward building better, more trustworthy medical institutions, said Aaron Goldenberg, who directs the Bioethics Center for Community Health and Genomic Equity (CHANGE) at Case Western Reserve University."

The Ethics Of Who Gets The COVID-19 Vaccine And When; NPR, December 20, 2021

NPR; The Ethics Of Who Gets The COVID-19 Vaccine And When

"NPR's Michel Martin speaks with Ruth Faden, founder of the Berman Institute of Bioethics at Johns Hopkins University, about the ethics of determining who gets vaccinated when resources are limited."

Daniel Callahan, 88, Dies; Bioethics Pioneer Weighed ‘Human Finitude’; The New York Times, July 23, 2019

Katharine Q. Seelye, The New York Times; Daniel Callahan, 88, Dies; Bioethics Pioneer Weighed ‘Human Finitude’

“The scope of his interests was impressively wide, as the Hastings Center said in an appreciation of him, “beginning with Catholic thought and proceeding to the morality of abortion, the nature of the doctor-patient relationship, the promise and peril of new technologies, the scourge of high health care costs, the goals of medicine, the medical and social challenges of aging, dilemmas raised by decision-making near the end of life, and the meaning of death.”...

Among his most important books was “Setting Limits: Medical Goals in an Aging Society” (1987), which argued for rationing the health care dollars spent on older Americans.”…

“He urged his peers and the public to look beyond narrow issues in law and medicine to broader questions of what it means to live a worthwhile life,” Dr. Appel said by email.”…

While at Harvard, Mr. Callahan became disillusioned with philosophy, finding it irrelevant to the real world. At one point, he wandered over to the Harvard Divinity School to see if theology might suit him better. As he wrote in his memoir, “In Search of the Good: A Life in Bioethics” (2012), he concluded that theologians asked interesting questions but did not work with useful methodologies, and that philosophers had useful methodologies but asked uninteresting questions.”

Scientist Who Edited Babies’ Genes Is Likely to Face Charges in China; The New York Times, January 21, 2019

Austin Ramzy and Sui-Lee Wee, The New York Times; Scientist Who Edited Babies’ Genes Is Likely to Face Charges in China

"Dr. He’s announcement raised ethical concerns about the long-term effects of such genetic alterations, which if successful would be inherited by the child’s progeny, and whether other scientists would be emboldened to try their own gene-editing experiments.

Scientists inside and outside China criticized Dr. He’s work, which highlighted fears that the country has overlooked ethical issues in the pursuit of scientific achievement. The Chinese authorities placed Dr. He under investigation, during which time he has been kept under guard at a guesthouse at the Southern University of Science and Technology in the city of Shenzhen."

The ethics of gene editing: Lulu, Nana, and 'Gattaca; Johns Hopkins University, January 17, 2019

Saralyn Cruickshank, Johns Hopkins University; The ethics of gene editing: Lulu, Nana, and 'Gattaca

"Under the direction of Rebecca Wilbanks, a postdoctoral fellow in the Berman Institute of Bioethics and the Department of the History of Medicine, the students have been immersing themselves during in the language and principles of bioethics and applying what they learn to their understanding of technology, with an emphasis on robotics and reproductive technology in particular.

To help them access such heady material, Wilbanks put a spin on the course format. For the Intersession class—titled Science Fiction and the Ethics of Technology: Sex, Robots, and Doing the Right Thing—students explore course materials through the lens of science fiction.

"We sometimes think future technology might challenge our ethical sensibilities, but science fiction is good at exploring how ethics is connected to a certain way of life that happens to include technology," says Wilbanks, who is writing a book on how science fiction influenced the development of emerging forms of synthetic biology. "As our way of life changes together with technology, so might our ethical norms.""

In China, Gene-Edited Babies Are the Latest in a String of Ethical Dilemmas; The New York Times, November 30, 2018

Sui-Lee Wee and Elsie Chen, The New York Times;
In China, Gene-Edited Babies Are the Latest in a String of Ethical Dilemmas

"China has set its sights on becoming a leader in science, pouring millions of dollars into research projects and luring back top Western-educated Chinese talent. The country’s scientists are accustomed to attention-grabbing headlines by their colleagues as they race to dominate their fields.

But when He Jiankui announced on Monday that he had created the world’s first genetically edited babies, Chinese scientists — like those elsewhere — denounced it as a step too far. Now many are asking whether their country’s intense focus on scientific achievement has come at the expense of ethical standards.

 

“He studied in the United States, why did he only do this in China?” said Wang Yifang, a medical ethics expert with the School of Medical Humanities at Peking University. “It may still be related to the fact that we have a gap in our ethical supervision — it is not very strict, and some people think it’s dispensable.”"

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.""

Why Doctors Should Read Fiction: Could a simple literary exercise make physicians more caring?; The Atlantic, July 30, 2018

Sam Kean, The Atlantic;

Why Doctors Should Read Fiction: Could a simple literary exercise make physicians more caring?

"The annals of literature are packed with writers who also practiced medicine: Anton Chekhov, Arthur Conan Doyle, William Carlos Williams, John Keats, William Somerset Maugham, and on and on. As doctors, they saw patients at their most vulnerable, and their medical training gave them a keen eye for observing people and what makes them tick.

But if studying medicine is good training for literature, could studying literature also be good training for medicine? A new paper in Literature and Medicine, “Showing That Medical Ethics Cases Can Miss the Point,” argues yes. In particular, it proposes that certain literary exercises, like rewriting short stories that involve ethical dilemmas, can expand doctors’ worldviews and make them more attuned to the dilemmas real patients face."

Gene Editing for ‘Designer Babies’? Highly Unlikely, Scientists Say; New York Times, August 4, 2017

Pam Belluck, New York Times; Gene Editing for ‘Designer Babies’? Highly Unlikely, Scientists Say

"In the future, will there be nations that allow fertility clinics to promise babies with genetically engineered perfect pitch or .400 batting averages? It’s not impossible. Even now, some clinics in the United States and elsewhere offer unproven stem cell therapies, sometimes with disastrous consequences.

But R. Alta Charo, a bioethicist at University of Wisconsin-Madison, who co-led the national committee on human embryo editing, said historically ethical overreach with reproductive technology has been limited.

Procedures like I.V.F. are arduous and expensive, and many people want children to closely resemble themselves and their partners. They are likely to tinker with genes only if other alternatives are impractical or impossible.

“You hear people talking about how this will make us treat children as commodities and make people more intolerant of people with disabilities and lead to eugenics and all that,” she said.

“While I appreciate the fear, I think we need to realize that with every technology we have had these fears, and they haven’t been realized.”"