News from Bioethics.com

Losing Hope Amid Uganda Doctors’ Strike

1 day 14 hours

(BBC) – Uganda’s doctors have gone on strike, fed up with what they say are the lowest wages in Africa and a lack of resources. They are demanding that their salaries, currently starting at just $260 a month for junior doctors, increased 10-fold, as well as benefits like cars and domestic workers. But as the fight between the Uganda Medical Association and the government rumbles on, what does it mean for those Ugandans in desperate need of medical attention?

Human Head Transplants Are about to Happen in China: But Where Are the Bodies Coming From?

1 day 15 hours

(Newsweek) – Whether or not we believe head transplants will “work” or whether or not we want them to happen, the fact is the technology to perform them is being developed in China right now. We have been disappointed by the initial responses from experts weighing in on the matter. So far the general response has been either to mock the character of Sergio Canavero, the neurosurgeon proposing the operations, or ignore the subject in the hope it goes away. But we think these opinions and the reporting on this procedure has missed two critical questions: Why China? Why now?

A Human Being Has Been Injected with Gene-Editing Tools to Cure His Disabling Disease. Here’s What You Need to Know

1 day 16 hours

(Science) – For the first time, researchers have infused a person’s blood with gene-editing tools, aiming to treat his severe inherited disease, The Associated Press (AP) reported today. The 44-year-old patient has a rare metabolic disorder called Hunter syndrome. But how big is the advance—and what does it mean for using hot new technologies such as CRISPR to help people with other genetic diseases?

$1 Million Price Tag in Spotlight as Gene Therapy Becomes Reality

2 days 10 hours

(Reuters) – Battle lines are being drawn as the first gene therapy for an inherited condition nears the U.S. market, offering hope for people with a rare form of blindness and creating a cost dilemma for healthcare providers. Spark Therapeutics, whose Luxturna treatment has been recommended for U.S. approval, told investors last week there was a case for valuing it at more than $1 million per patient, although it has yet to set an actual price.

US Health Agency to Crack Down on Risky Stem Cell Offerings

2 days 10 hours

(ABC News) – U.S. health authorities announced plans Thursday to crack down on doctors pushing stem cell procedures that pose the gravest risks to patients amid an effort to police a burgeoning medical field that previously has received little oversight. The Food and Drug Administration laid out a strategy for regulating cell-based medicine, including hundreds of private clinics that have opened across the nation in the last decade. Many of the businesses promote stem cell injections for dozens of diseases including arthritis, multiple sclerosis and even Alzheimer’s. They can cost $5,000 to $50,000, but there’s little research that such procedures are safe or effective.

Research Team Unlocks Secrets of Ebola

2 days 10 hours

(Medical Xpress) – Conducting a sweeping analysis of everything from enzymes to lipids to immune-system-associated molecules, the team—which includes researchers from Pacific Northwest National Laboratory (PNNL), Icahn School of Medicine at Mount Sinai, the University of Tokyo and the University of Sierra Leone—found 11 biomarkers that distinguish fatal infections from nonfatal ones and two that, when screened for early symptom onset, accurately predict which patients are likely to die. With these results, says senior author Yoshihiro Kawaoka, a virology professor at the UW-Madison School of Veterinary Medicine, clinicians can prioritize the scarce treatment resources available and provide care to the sickest patients.

A New Study Found a Big Problem with a Popular Opioid Addiction Medication

3 days 8 hours

(Vox) – For the first time, a new study in The Lancet, sponsored by the National Institute on Drug Abuse (NIDA), compared the effectiveness of naltrexone with buprenorphine in the US. The results were both promising and disappointing. While naltrexone is as effective as buprenorphine once treatment begins, it is also significantly more difficult to actually start naltrexone because it requires an extensive detox period — which can span more than a week — that buprenorphine does not.

FDA Clears Electronic Earpiece to Block Opioid Withdrawal Symptoms

3 days 8 hours

(STAT News) – A wearable device claiming to block the pain of opioid withdrawal has been cleared by the Food and Drug Administration under an expedited review process for medical devices. However, patient safety advocates note that the device has limited evidence for its effectiveness. The NSS-2 Bridge is a device that attaches to the ear and transmits small electrical pulses through four cranial nerves. It’s marketed by Indiana-based Innovative Health Solutions, and was cleared to treat chronic and acute pain in 2014. IHS can now market the device as one that reduces symptoms of opioid withdrawal including nausea, anxiety, and aches.

Doctors Are Attempting the First Case of Gene Editing Inside the Body of a Living Human

3 days 9 hours

(Quartz) – But Madeux’s life might be about to change. He is the first patient to receive an experimental gene therapy as part of a clinical trial. Earlier this week, Sangamo Therapeutics injected Madeux with viruses containing a package of gene-editing material, according to the AP. The hope is that these viruses will enter Madeux’s cells, specifically liver cells, inject the missing gene at the right place in his DNA. Only about 1% of the liver’s cells need to be fixed, and give his liver the ability to produce the enzyme he has been missing all his life.

Should a Hospital Block a Recently Jailed Father from Donating a Kidney to Save His Son?

4 days 10 hours

(Quartz) – A.J. has now survived long enough that he can receive a kidney transplant, something that would allow him a healthy and normal childhood unmarked by the trials of constant dialysis. His father Anthony Dickerson is an excellent match and eager to donate, but the hospital has said no. The reason why reveals a troubling strain of paternalism in how our transplant field treats living organ donors. Anthony’s donation was scheduled for Oct. 3, but on Sep. 28 he was jailed for a parole violation. The authorities released him in time for surgery, but that’s when the transplant center balked, requiring that Dickerson “demonstrate good behavior” for three months before he would be reconsidered as a donor candidate.

FDA Issues Strong Warning against Kratom, an Herbal Supplement Used to Treat Pain and Other Conditions

4 days 10 hours

(STAT News) – The Food and Drug Administration on Tuesday issued a public health advisory about the potential risks of an herbal supplement called kratom, warning that people who use it to treat pain in place of opioids or to wean themselves off opioids are exposing themselves to an unregulated product that has not been proven safe or effective. The announcement from FDA Commissioner Scott Gottlieb is sure to rile devoted kratom users, who contend the supplement has provided them with a way to manage pain, anxiety, and a range of other conditions.

Pros and Cons of the New Digital Pills That Connect to Your Smartphone

4 days 10 hours

(Quartz) – The health-care community lit up in conversation after news broke that the US Food and Drug Administration (FDA) has approved the world’s first digital drug. It’s a pill that contains a minuscule chip—made of magnesium, silicon, and copper—that can send information from inside the body to an adhesive patch that’s placed on a patient’s torso. The patch can send data to a doctor’s office, as well as to a special smartphone app for those who wish to monitor themselves, until the chip is naturally digested.

Supreme Court Takes on Case about Free Speech and Abortion

4 days 11 hours

(NPR) – Does a California law violate the Constitution by requiring anti-abortion pregnancy centers to inform clients about free or low-cost abortion and contraception services? That’s the question the Supreme Court is taking on, in a new case it accepted on Monday. California’s Reproductive FACT Act became law in October of 2015. It requires licensed and covered facilities to give all their clients notice that the state “has public programs that provide immediate free or low-cost access to comprehensive family planning services, prenatal care, and abortion, for eligible women.”

New Gene Therapy for Blindness May Soon Be Reality

5 days 11 hours

(News-Medical) – Patients who had lost their sight to an inherited retinal disease could see well enough to navigate a maze after being treated with a new gene therapy, according to research presented today at AAO 2017, the 121st Annual Meeting of the American Academy of Ophthalmology. Patients in the study had a condition called Leber congenital amaurosis (LCA), which begins in infancy and progresses slowly, eventually causing complete blindness. This new, first-of-its-kind gene therapy is currently under review by the U.S. Food and Drug Administration for potential approval this year. There are currently no treatments available for inherited retinal diseases.

Parents Reach Settlement with IVF Clinic after Sons Were Born with Genetic Condition Fragile X Syndrome

5 days 11 hours

(Sydney Morning Herald) – Before she had her two sons, Leighee Eastbury was told she wasn’t a carrier for Fragile X syndrome, a genetic condition that her boys will now live with for the rest of their lives. It wasn’t until her oldest son Hayden was a toddler that Ms Eastbury learned that she was in fact a carrier and both her boys were affected by the condition which causes intellectual disability. “I was devastated, absolutely devastated, it was something I had a test for … you base all your family planning and everything off that test,” she told reporters on Monday in Sydney.

Targeted by an Addiction Treatment Center, Union Workers Feel Trapped as Their Benefits Are Drained

1 week 1 day

(STAT News) – The teachers’ experience is a stark example of what’s happening around the country to union members fighting addiction. Treatment center operators and middlemen who act as brokers for those facilities are targeting these workers because they usually have generous insurance benefits that pay for long stays in rehab. They also often need a health care provider’s clearance to return to work, handing the centers tremendous power over patients.

‘Any Taboo Has Gone’: Netherlands Sees Rise in Demand for Euthanasia

1 week 1 day

(The Guardian) – The number of people euthanised in the Netherlands this year is set to exceed 7,000 – a 67% rise from five years ago – in what has been described by the director of the country’s only specialist clinic as the end of “a taboo” on killing patients who want to die. In 2012, 4,188 people were euthanised by doctors in the country, all of whom met the criteria laid down under the 2002 law that made it legal: a voluntary and well considered request in the context of unbearable suffering from which there is no prospect of improvement, or alternative remedy. This year, 18,000 requests for help to die have been made, including 2,500 – up from 1,234 in 2015 – to the Levenseindekliniek – the only medical facility in the Netherlands that specialises in euthanasia.

Tiny Human Brain Organoids Implanted into Rodents, Triggering Ethical Concerns

1 week 2 days

(STAT News) – These micro quasi-brains are revolutionizing research on human brain development and diseases from Alzheimer’s to Zika, but the headlong rush to grow the most realistic, most highly developed brain organoids has thrown researchers into uncharted ethical waters. Like virtually all experts in the field, neuroscientist Hongjun Song of the University of Pennsylvania doesn’t “believe an organoid in a dish can think,” he said, “but it’s an issue we need to discuss.”

Facing Facts: Artificial Intelligence and the Resurgence of Physiognomy

1 week 2 days

(Undark Magazine) – This dystopian nightmare might not be that farfetched, some academics warn, given the rise of big data, advances in machine learning, and — most worryingly — the current rise in studies that bear a troubling resemblance to the long-abandoned pseudoscience of physiognomy, which held that the shape of the human head and face revealed character traits. Modern computers are much better at scanning minute details in human physiology, modern advocates of such research say, and thus the inferences they draw are more reliable. Critics, on the other hand, dismiss this as bunkum. There is little evidence linking outward physical characteristics and anything like predictable behavior, they note.

A Dying Boy Gets a New Gene-Corrected Skin

1 week 3 days

(The Atlantic) – In August, De Luca and Pelligrini got the green light to try their technique. In September, they collected a square inch of skin from Hassan’s groin—one of the few parts of his body with intact skin. They isolated stem cells, genetically modified them, and created their gene-corrected skin grafts. In October and November, they transplanted these onto Hassan, replacing around 80 percent of his old skin. It worked. In February 2016, Hassan was discharged from the hospital. In March, he was back in school. He needs no ointments. His skin is strong. It doesn’t even itch. “He hasn’t developed a single blister,” says de Luca, who shared the details of Hassan’s story with me. “He’s gaining weight. He’s playing sports. He’s got a normal social life.”

Four Ethical Priorities for Neurotechnologies and AI

1 week 3 days

(Nature) – It might take years or even decades until BCI and other neurotechnologies are part of our daily lives. But technological developments mean that we are on a path to a world in which it will be possible to decode people’s mental processes and directly manipulate the brain mechanisms underlying their intentions, emotions and decisions; where individuals could communicate with others simply by thinking; and where powerful computational systems linked directly to people’s brains aid their interactions with the world such that their mental and physical abilities are greatly enhanced. Such advances could revolutionize the treatment of many conditions, from brain injury and paralysis to epilepsy and schizophrenia, and transform human experience for the better. But the technology could also exacerbate social inequalities and offer corporations, hackers, governments or anyone else new ways to exploit and manipulate people. And it could profoundly alter some core human characteristics: private mental life, individual agency and an understanding of individuals as entities bound by their bodies.

Skin Regeneration with Insights

1 week 3 days

(Nature) – Somewhere in Germany’s Ruhr valley, a nine-year-old boy is doing what children do: playing football, joking around with friends and going to school. Two years ago, he was confined to a hospital bed, dying of a rare and cruel genetic skin disease. In a landmark paper online in Nature this week, scientists and clinicians present the details of his astonishing recovery. The boy had junctional epidermolysis bullosa, or JEB. He, like other people with the disease, carried a mutation in a gene that controls the integrity of the skin. Doctors could only try to ease his suffering as some 80% of his skin simply fell away.

Hockey and DNA: Personalized Genetic Tests Show Up Rink-Side

1 week 3 days

(STAT News) – At an NHL hockey game, it’s not uncommon to see some blood. The other day, it turned out to be some of my own. The good news is that it was all in the name of science. The Boston-based consumer genetics company Orig3n had announced that it was planning to set up booths at a Boston Bruins game I was going to attend. Along with other fans, I could get a free DNA test and learn about my own genes. These kinds of tests are increasingly common — and many of them are marketed toward fitness junkies and sports fans like myself. The idea is that you can discover all kinds of things you never knew about your health.

How Doctors Are Getting Rich on Urine Tests for Opioid Patients

1 week 4 days

(Bloomberg) – The high-tech testing lab’s raw material has become liquid gold for the doctors who own Comprehensive Pain Specialists. This testing process, driven by the nation’s epidemic of painkiller addiction, generates profits across the doctor-owned network of 54 clinics, the largest pain-treatment practice in the Southeast. Medicare paid the company at least $11 million for urine and related tests in 2014, when five of its professionals stood among the nation’s top billers.

Should Children Form Emotional Bonds with Robots?

1 week 4 days

(The Atlantic) – Stefania Druga and Randi Williams, the researchers behind the study, want to know how children perceive smart robots, and, eventually, to study how those bots affect kids’ cognitive development. So far, they’ve discovered that little children (ages 3 and 4) aren’t sure whether the robots are smarter than they are, but that slightly older children (ages 6 to 10) believe the robots to have superior intelligence. Druga and Williams were inspired by the research of the legendary Sherry Turkle, who wrote a highly influential 1984 book called The Second Self.

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