Bioethics News.
12/14/2018
Gene editing: who should decide?
Nature
Last month’s announcement claiming the birth of the world’s first genome-edited babies has sparked a furore over how to regulate this cutting-edge technology (see Nature 563, 607–608; 2018, and Nature564, 5; 2018). In our view, piling up scientist-led conferences modelled on Asilomar in 1975 (see Nature 526, 293–294; 2015) without any clear consensus is futile.
12/13/2018
Trump administration halts study that would use fetal tissue ‘to discover a cure for HIV’
The Washington Post
The shutdown of the HIV research at the federal lab in Montana, first reported in Science, was never disclosed publicly by government officials, who have forbidden affected researchers from discussing what happened. But colleagues say they are incensed by the action, which has fanned a controversy that pits the biomedical research community against antiabortion activists and other social conservatives pressing the administration to stop the flow of federal grants and contracts for work involving fetal tissue. Such tissue comes from elective abortions.
12/12/2018
Investigation of generic ‘cartel’ expands to 300 drugs
The Washington Post
What started as an antitrust lawsuit brought by states over just two drugs in 2016 has exploded into an investigation of alleged price-fixing involving at least 16 companies and 300 drugs, Joseph Nielsen, an assistant attorney general and antitrust investigator in Connecticut who has been a leading force in the probe, said in an interview. His comments in an interview with The Washington Post represent the first public disclosure of the dramatically expanded scale of the investigation.
12/11/2018
What These Medical Journals Don’t Reveal: Top Doctors’ Ties to Industry
The New York Times
The Sarah Cannon Research Institute, based in Nashville, received nearly $8 million in payments from drug companies on behalf of its president for clinical operations, Dr. Howard Burris, largely for research work. Dozens of his articles published in prestigious medical journals did not include the required disclosures of those payments and relationships.
12/11/2018
The CRISPR Baby Scandal Gets Worse by the Day
The Atlantic
Before last week, few people had heard the name He Jiankui. But on November 25, the young Chinese researcher became the center of a global firestorm when it emerged that he had allegedly made the first crispr-edited babies, twin girls named Lulu and Nana. Antonio Regalado broke the story for MIT Technology Review, and He himself described the experiment at an international gene-editing summit in Hong Kong. After his talk, He revealed that another early pregnancy is under way.
It is still unclear if He did what he claims to have done. Nonetheless, the reaction was swift and negative. The crispr pioneer Jennifer Doudna says she was “horrified,” NIH Director Francis Collins said the experiment was “profoundly disturbing,” and even Julian Savulescu, an ethicist who has described gene-editing research as “a moral necessity,” described He’s work as “monstrous.”
12/09/2018
Why Are Scientists So Upset About the First Crispr Babies?
The New York Times
A Chinese scientist recently claimed he had produced the world’s first gene-edited babies, setting off a global firestorm. If true — the scientist has not yet published data that would confirm it — his actions would be a sensational breach of international scientific conventions. Although gene editing holds promise to potentially correct dangerous disease-causing mutations and treat some medical conditions, there are many safety and ethical concerns about editing human embryos.
Here are answers to some of the numerous questions swirling around this development.
12/08/2018
Microsoft calls for laws to prevent facial recognition AI from hurting consumers
The LA Times
Microsoft Corp. called for new legislation to govern artificial intelligence software for recognizing faces, advocating for human review and oversight of the technology in crucial cases.
“This includes where decisions may create a risk of bodily or emotional harm to a consumer, where there may be implications on human or fundamental rights, or where a consumer’s personal freedom or privacy may be impinged,” Microsoft’s president and chief legal officer, Brad Smith, wrote in a blog post published Thursday in conjunction with a speech on the topic at the Brookings Institution think tank.
12/07/2018
Policy Recommendations: Control and Responsible Innovation of Artificial Intelligence
The Hastings Center
A major international project at The Hastings Center released policy recommendations for the development of artificial intelligence and robotics to help reap the benefits and productivity gains and minimize the risks and undesirable social consequences.
“Research, innovation, and the deployment of AI and robotic systems are proceeding rapidly, and so, too, is the emergence of a transdisciplinary community of researchers in AI and the social sciences dedicated to AI safety and ethics,” states the executive summary to the final report. “The Hastings AI workshops played a seminal role in catalyzing the emergence of this worldwide network of organizations and individuals.” The Hastings Center’s project, Control and Responsible Innovation in the Development of AI and Robotics, was funded by the Future of Life Institute and led by Wendell Wallach, a senior advisor at The Hastings Center and a scholar at Yale University’s Interdisciplinary Center for Bioethics. Wallach is an internationally recognized expert on the ethical and governance concerns posed by emerging technologies, particularly artificial intelligence and neuroscience. Project participants included Stuart Russell, of the University of California, Berkeley; Bart Selman, of Cornell University; Francesca Rossi, of IBM; and David Roscoe, a Hastings Center advisory council member.
12/06/2018
Should We Edit the Human Germline? Is Consensus Possible or Even Desirable?
The Hastings Center
On the one hand, reports of a rogue scientist, He Jiankui, who contravened the scientific and ethical norms that should guide the development of human genome editing reinforces the need for clarity about those norms and international monitoring of advances in the field. On the other hand, it shows the weaknesses and limitations of voluntary efforts – like the summit – to guide scientists’ practices. They lack any real enforcement power on their own, and have largely served to ensure that human genome editing research can continue, rather than promote reflection on whether we should edit the human germline in the first place.
12/06/2018
If you’re single with cancer, you may get less aggressive treatment than a married person
The Washington Post
If you are divorced, widowed or never married and develop cancer, watch out. You may get less aggressive treatment than your married friends.
We’ve often heard about studies showing that married adults are more likely to survive cancer than singles. But buried in those same studies is another finding that hasn’t made the headlines. When surgery or radiotherapy is the treatment of choice, patients with spouses are more likely to get it.
12/05/2018
Genetically Modified People Are Walking Among Us
The New York Times
It felt as if humanity had crossed an important line: In China, a scientist named He Jiankui announced on Monday that twins had been born in November with a gene that he had edited when they were embryos.
But in some ways this news is not new at all. A few genetically modified people already walk among us.
12/04/2018
‘From Nothing to Gangbusters’: A Treatment for Sickle-Cell Disease Proves Effective in Africa
The New York Times
A drug that protects children in wealthy countries against painful and sometimes lethal bouts of sickle-cell disease has been proven safe for use in Africa, where the condition is far more common, scientists reported on Saturday.
More research remains to be done, experts said, but knowing that hydroxyurea — a cheap, effective and easy-to-take pill — can safely be given to African children may save millions of youngsters from agonizing pain and early deaths.
“I think this is going to be amazing,” said Dr. Ifeyinwa Osunkwo, who directs a sickle-cell disease program in Charlotte, N.C., but was not involved in the new study.
12/03/2018
Medical Detectives: The Last Hope for Families Coping With Rare Diseases
KQED Science
All over the country, specialized strike teams of doctors are giving hope to families who are desperately searching for a diagnosis.
The medical sleuths have cracked more than a third of the 382 patient cases they’re pursuing, according to a recent paper in the New England Journal of Medicine.
12/03/2018
Watching My Patient Die, Remotely
The New York Times
As more and more hospitals have adopted electronic medical records, their records have become linked and you can follow your patients, virtually, hundreds of miles away.
12/02/2018
Battle Against Ebola in Congo Pits Medical Hope Against Local Chaos
The New York Times
A vaccine and new treatments are on hand, but the outbreak is in an area rife with unpredictable gunfire, bandits and suspicion of outsiders.
12/01/2018
This high school was rocked by an HIV scare 10 years ago
The Washington Post
Ten years ago, Jennifer Wyms was a 17-year-old junior at Normandy High School in Wellston, Mo. She was the captain of her school’s hip-hop dance team and enjoyed going to the mall with friends. But when a health scare engulfed her St. Louis community, it cast a shadow on her high school experience.
A letter from school officials sent to parents and guardians in October 2008 relayed the news that epidemiologists with the St. Louis County Department of Health had grounds to believe that HIV may have been transmitted among some students — as many as 50 students at Normandy High School could have been exposed, it said.
“Everybody wanted to know, who had it? Where it came from? Why our school?” Wyms told The Washington Post.
11/30/2018
Dangerous Infection Tied To Hospitals Now Becoming Common Outside Them
NPR
Named from the Greek kloster, for spindle, a class of bacteria known as Clostridia abounds in nature.
Staining deep violet under the microscope, they appear as slender rods with a bulge at one end, like a tadpole or maple seed. They thrive in soil, marine sediments and humans. They live on our skin and in our intestines.
And sometimes, they can kill you.
11/30/2018
China Halts Work by Scientist Who Says He Edited Babies’ Genes
New York Times
BEIJING — China said on Thursday that it had suspended the work of a scientist who claims to have created the world’s first genetically edited babies, saying his conduct appeared to be unethical and in violation of Chinese law.
The scientist, He Jiankui, announced on Monday that he had used the gene-editing technique Crispr to alter embryos, which he implanted in the womb of a woman who gave birth to twin girls this month. At an international conference on Wednesday, he asserted that he was proud of what he had done.
11/30/2018
‘Landmark study’ shows brain cells revamp their DNA, perhaps sparking Alzheimer’s disease
Science
Unlike most cells in our bodies, the neurons in our brain can scramble their genes, scientists have discovered. This genome tampering may expand the brain’s protein repertoire, but it may also promote Alzheimer’s disease, their study suggests.
“It’s potentially one of the biggest discoveries in molecular biology in years,” says Geoffrey Faulkner, a molecular biologist at the University of Queensland in Brisbane, Australia, who wasn’t connected to the research. “It is a landmark study,” agrees clinical neurologist Christos Proukakis of University College London.
11/28/2018
Outbreak Culture: The Ebola Crisis and the Next Epidemic
The Washington Post
When Ebola broke out in West Africa in 2014, it spread with dizzying speed — and outwitted responders. By the time the epidemic ended in 2016, more than 28,000 people had been infected and 11,325 had died. It didn’t have to be that way, write Pardis Sabeti and Lara Salahi. In “Outbreak Culture: The Ebola Crisis and the Next Epidemic,” they uncover the chaos behind the world’s response to the 2014-2016 Ebola outbreak, and posit how it could have been avoided.
11/27/2018
Researcher, American professor behind baby gene editing claims now under investigation
USA Today
A Chinese researcher claiming to have led a team that genetically edited human babies is now under investigation, as well as an American professor who might have helped him.
He Jiankui, an associate professor at Shenzhen’s Southern University of Science and Technology of China, revealed his gene editing work on Monday to an organizer of an international conference on gene editing in Hong Kong. He told the Associated Press he altered the DNA of twin girls born this month to resist HIV and AIDS virus. He said he’s altered embryos for seven couples in fertility treatments, but only had one pregnancy result.
11/27/2018
Task Force Calls for Offering PrEP to All at High Risk for H.I.V.
The New York Times
An influential government task force has drafted a recommendationthat would for the first time urge doctors to offer a daily prophylactic pill to patients who are at risk for contracting H.I.V. The recommendation would include all men and women whose sexual behavior, sex partners or drug use place them at high risk of contracting the virus that causes AIDS.
11/26/2018
Chinese researcher claims first gene-edited babies
AP News
A Chinese researcher claims that he helped make the world’s first genetically edited babies — twin girls born this month whose DNA he said he altered with a powerful new tool capable of rewriting the very blueprint of life.
If true, it would be a profound leap of science and ethics.
A U.S. scientist said he took part in the work in China, but this kind of gene editing is banned in the United States because the DNA changes can pass to future generations and it risks harming other genes.
11/26/2018
Chickenpox Outbreak at School Linked to Vaccine Exemptions
The New York Times
At least three dozen students have come down with chickenpox at a private school in North Carolina — nearly one-quarter of the student body — in what health officials call the largest outbreak in the state since the chickenpox vaccine became available more than two decades ago.
The students, who range in age from 4 to 11 years old, attend the Asheville Waldorf School in Asheville, N.C., about 120 miles west of Charlotte. They began falling ill in mid-September, said Dr. Jennifer Mullendore, the medical director for Buncombe County Health & Human Services.
11/21/2018
How Do Wishes Granted To Very Sick Kids Affect Their Health?
National Public Radio
The children granted wishes were substantially less likely to visit the emergency department or to have an unplanned hospital admission within two years as compared with children who hadn’t received wishes. (Researchers matched the children’s personal and disease characteristics in the study.)
“My hypothesis is that these kids, when they come back, are more engaged with their families and medical providers, and perhaps they’re more adherent to their treatment plan,” says the study’s lead author Dr. Anup D. Patel, section chief of neurology at Nationwide Children’s Hospital and an associate professor of pediatrics at Ohio State University College of Medicine in Columbus.
11/20/2018
Adverse reactions to antibiotics land thousands of kids in the ER each year. What parents should know
The Washington Post
Nearly 70,000 children end up in emergency rooms every year after experiencing adverse reactions to antibiotic drugs, according to an analysis by the Centers for Disease Control and Prevention (CDC) published in August in the Journal of the Pediatric Infectious Diseases Society.
About 74 million antibiotic prescriptions are doled out to kids each year, the study notes, and past research has indicated that at least one-third of these pediatric antibiotic prescriptions are unnecessary.
11/19/2018
New Peanut Allergy Drug Shows ‘Lifesaving’ Potential
The New York Times
Results from a new study may lead to approval of what could be the first drug that ameliorates potentially deadly reactions in children with severe peanut allergies.
11/16/2018
When Hospitals Merge to Save Money, Patients Often Pay More
The New York Times
The mergers have essentially banished competition and raised prices for hospital admissions in most cases, according to an examination of 25 metropolitan areas with the highest rate of consolidation from 2010 through 2013, a peak period for mergers.
11/15/2018
What if the Placebo Effect Isn’t a Trick?
The New York Times
But as ubiquitous as the phenomenon is, and as plentiful the studies that demonstrate it, the placebo effect has yet to become part of the doctor’s standard armamentarium — and not only because it has a reputation as “fake medicine” doled out by the unscrupulous to the credulous. It also has, so far, resisted a full understanding, its mechanisms shrouded in mystery. Without a clear knowledge of how it works, doctors can’t know when to deploy it, or how.