News from Bioethics.com

New Gene Therapy for Blindness May Soon Be Reality

2 months 1 week

(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

2 months 1 week

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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

2 months 2 weeks

(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?

2 months 2 weeks

(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.

Over-the-Counter Painkillers Treated Painful Injuries Just as Well as Opioids in New Study

2 months 2 weeks

(Los Angeles Times) – In an opioid epidemic that currently claims an average of 91 lives per day, there have been many paths to addiction. For some, it started with a fall or a sports injury, a trip to a nearby emergency room and a prescription for a narcotic pain reliever that seemed to work well in the ER. New research underscores how tragically risky — and unnecessary — such prescribing choices have been. In a new study of patients who showed up to an emergency department with acute pain in their shoulders, arms, hips or legs, researchers found that a cocktail of two non-addictive, over-the-counter drugs relieved pain just as well as — and maybe just a little better than — a trio of opioid pain medications widely prescribed under such circumstances.

For Patients with Heart Failure, Little Guidance as Death Nears

2 months 2 weeks

(New York Times) – Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study. That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

‘You Could Do It Tomorrow’: How Soon Is ‘Soon’ for Trans Women Wanting to Give Birth?

2 months 2 weeks

(Sacramento Bee) – Medical treatments for transgender people have gone “mainstream,” according to Richard Paulson, an obstetrician-gynecologist in Los Angeles and the president of the American Society for Reproductive Medicine. With that comes the prospect for a medical development that could shatter some of the most strongly-held beliefs for centuries about biological sex and the ability to conceive a child. In short, some scientists believe that transgender women — those who were assigned male at birth — could soon give birth.

The Public’s Distrust of Biotech Is Deepening. Commercialization May Be to Blame.

2 months 2 weeks

(Undark) – Harvard medical geneticist Robert C. Green, reflective, cautious, and as decent as a scientist can sound, took to television last month to make people aware of an open trial at the Brigham and Women’s Hospital, which uses genomic sequencing to screen for variants that can predict 1,800 genetic conditions in newborns. The cutting-edge study foreshadows what genetic science might bestow to human health, but the more interesting takeaway is that the failure of the study to connect with the public — very few are enrolling — may signify a deepening distrust of biotech.

Should Patients with Dementia Be Able to Decline Spoon-Feeding?

2 months 2 weeks

(NPR) – People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out: They could officially document their wishes to halt such interventions using advance directives. Even patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity could write advance directives. But caregivers and courts have rarely honored patients’ wishes to refuse food and fluids offered by hand.

Why Plague Caught Madagascar Unaware

2 months 3 weeks

(BBC) – Madagascar is facing the worst outbreak of plague in 50 years. There have been more than 1,800 cases and 127 deaths since the start of August, according to new figures. The island off the south-east coast of Africa is used to seeing about 400 cases of mostly bubonic plague in the same rural areas every year.  But this year it has developed into the deadlier pneumonic version and spread to much more populated areas, including the capital.

Heart Disease Death Rate Plummets, But Overdose Death Rate Rises, CDC Says

2 months 3 weeks

(CNN) – Three new reports from the US Centers for Disease Control and Prevention bring both good and bad news about Americans’ health. Death rates for heart disease, cancer and HIV are all down in the United States in the year ending mid-2017 compared to the same period last year, according to one report published Friday by the CDC’s National Center for Health Statistics. Despite these “wins,” the overall mortality rate has increased from the same time last year, the report also indicated. This overall uptick includes the death rate for drug overdoses.

MDMA’s Journey from Molly to Medicine

2 months 3 weeks

(Scientific American) – The speed and effectiveness of the psychedelic experience Casey describes has caught the attention of the Food and Drug Administration, despite the Drug Enforcement Administration’s 1985 classification of MDMA as a Schedule I substance—the murderer’s row of illicit drugs that include heroin and are deemed to have no medical value. This past August the FDA granted MDMA “breakthrough therapy” status in the treatment of PTSD, meaning it may provide a substantial improvement over existing therapies. The agency will work closely with MAPS—a privately funded research institute founded 31 years ago in Santa Cruz, California—to design and conduct phase III trials starting next spring. This marks the first time psychedelic-assisted psychotherapy will be monitored in phase III trials for possible prescription use.

West Virginia Cities Sue Accrediting Group over Painkillers

2 months 3 weeks

(STAT News) – Several West Virginia municipalities are suing The Joint Commission, claiming the Chicago-based health care accreditation group downplayed the dangers of prescription painkillers and helped fuel addictions. The Charleston Gazette-Mail reports that the cities of Charleston, Huntington and Kenova and the town of Ceredo filed the class-action lawsuit Thursday in Charleston.

Baby Gene Therapy Study Offers Hope for Fatal Muscle Disease

2 months 3 weeks

(ABC News) – A first attempt at gene therapy for a disease that leaves babies unable to move, swallow and, eventually, breathe has extended the tots’ lives, and some began to roll over, sit and stand on their own, researchers reported Wednesday. Only 15 babies with spinal muscular atrophy received the experimental gene therapy, but researchers in Ohio credited the preliminary and promising results to replacing the infants’ defective gene early — in the first few months of life, before the neuromuscular disease destroyed too many key nerve cells.

EpiPen Failures Cited in Seven Deaths this Year, FDA Files Show

2 months 3 weeks

(Bloomberg) – EpiPens, which contain the hormone epinephrine (also known as adrenaline), are used to stave off allergic reactions that can in some cases kill. Failure of EpiPens to deploy correctly have been cited in seven deaths this year through mid-September, according to reports by patients and physicians made to the U.S. Food and Drug Administration and obtained by Bloomberg News. The FDA received a total of 228 reports of EpiPen or EpiPen Jr. failures during the same time period, according to documents made available as a result of a Freedom of Information Act request. In addition to the deaths, 35 people were hospitalized, according to the reports.

Bogus Breast Cancer Tests Are Putting Women’s Lives in Danger

2 months 3 weeks

(Quartz) – Last week, the US Food and Drug Administration issued a warning about advertisements for thermograms falsely claiming the technology could be as good or better than mammograms. In 1982, the FDA approved thermograms for breast-cancer screening—but only in conjunction with regular mammograms. Although thermography is not harmful in and of itself, there’s no scientific evidence that actually can detect breast cancer on its own. Since 2016, the FDA has issued two warnings to companies advertising preventative breast cancer screenings.

Workers Displaced by Automation Should Try a New Job: Caregiver

2 months 3 weeks

(Wired) – So what can help? There is a category of jobs today that is critical to our society. Many of us will employ the services of these workers, but these positions are all-too-often held in low esteem with poor pay and minimal career advancement prospects. Some are designing so-called social robots to take these jobs. Yet, these are jobs we categorically do not want machines doing for us, though machines could potentially assist humans. I am speaking of caregiving.

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