News from Bioethics.com

Alfie Evans Case: Supreme Court Rules Against Parents for Second Time

2 months 21 hours

(BBC) – The parents of terminally ill toddler Alfie Evans have lost the latest stage of their legal battle over his life support. Tom Evans and Kate James failed to persuade the Supreme Court that Alfie was being unlawfully detained at Alder Hey Children’s Hospital in Liverpool. The court also refused permission for the parents to appeal the decision. But Mr Evans said they would not give up and had made an “urgent application” to the European Court of Human Rights.

We’re Underestimating the Mind-Warping Potential of Fake Video

2 months 22 hours

(Vox) – Due to advances in artificial intelligence, it’s now possible to convincingly map anyone’s face onto the body of another person in a video. As Vox’s Aja Romano has explained, this technique is becoming more common in pornography: An actress’s head can be mapped onto a porn actress’s body. These “deepfakes” can be generated with free software, and they’re different from the photoshopping of the past. This is live action — and uncannily real.

What Can We Learn When a Clinical Trial Is Stopped?

2 months 22 hours

(Mosaic) – In any case, this long-term Broaden data echoes Mayberg’s findings, in several open-label studies done before and during the time of the Broaden trail, that the treatment gains effectiveness over time. The two-year results for these intensely sick people – half reaching the 40 per cent improvement threshold, almost a third in remission – stand sharply at odds with the six-month scores. What we have here is a failed clinical trial – of a treatment that seems to work.

23andMe Want You to Share Even More Health Data

2 months 4 days

(Wired) – Lots of people, though, get migraines. And allergies. And depression. 23andMe says it wants to help them, too—not by extracting insights from their DNA, but by harvesting the wisdom of the crowd. For the last few weeks, the company has been quietly rolling out a new health hub, where customers can share information about how they manage 18 common health conditions. They get to see which treatments work best, according to other users’ personal reports. And 23andMe gets a bunch of data it didn’t have before. It’s not hard to see who’s getting the better side of the deal.

In the Throes of an Opioid Crisis, Prescriptions Fell Dramatically Last Year

2 months 4 days

(STAT News) – The U.S. may be gripped by an opioid crisis, but a new report suggests the various measures undertaken to fight the scourge is having an effect — fewer prescriptions were written for the addictive painkillers. To wit, opioid prescriptions declined by 10.2 percent in 2017 and prescriptions for the highest doses fell by 16.1 percent last year, and 33.1 percent since January 2016. Moreover, on average, prescription opioid volume has decreased every year over the past five years in all 50 states, according to data from the IQVIA Institute for Human Data Science, which is part of the IQVIA market research firm.

The Next Generation of Doctors May Be Learning Bad Habits at Teaching Hospitals with Many Safety Violations

2 months 4 days

(STAT News) – But at some of these hospitals, residents may be learning bad habits. A STAT analysis of federal inspection data finds that there’s a wide gap in the quality of training at teaching hospitals, as shown by how frequently these hospitals are cited for deficiencies by the Centers for Medicare and Medicaid Services. While the majority of the roughly 1,200 teaching hospitals received no citations each year from 2014 to 2017, others racked up dozens of safety violations in that time period — putting patients at risk, and compromising the training that students receive.

Dutch Probe ‘Appalling’ Euthanasia of Dementia Patient

2 months 4 days

(Medical Xpress) – In a rare series of moves, Dutch authorities are investigating whether doctors may have committed crimes in five euthanasia cases, including the deaths of two women with advanced Alzheimer’s disease. In one of the Alzheimer’s cases, which prosecutors began probing in September, a physician drugged the patient’s coffee without her knowledge and then had the woman physically restrained while delivering the fatal injection. The ongoing criminal investigation is the first since the Netherlands made it legal for doctors to kill patients at their request in 2002.

Gene Therapy for Inherited Blood Disorder Reduced Transfusions

2 months 4 days

(NPR) – Gene therapy is showing promise for treating one of the most common genetic disorders. Results of a study published Wednesday show that 15 of 22 patients with beta-thalassemia who got gene therapy were able to stop or sharply reduce the regular blood transfusions they had needed to alleviate their life-threatening anemia. There were no serious side effects.

Pioneering Psychologist Hans Asperger Was a Nazi Sympathizer Who Sent Children to Be Killed, New Evidence Suggests

2 months 4 days

(Gizmodo) – The term “Asperger’s syndrome” will never be heard the same way again, owing to new research showing that Hans Asperger—the Austrian pediatrician for whom the disorder was named—was an active participant in the Nazi eugenics program, recommending that patients deemed “not fit for life” be sent to a notorious children’s “euthanasia” clinic. New research published today in the science journal Molecular Autism shows that Asperger wasn’t the man he led the public to believe he was.

Swiss Researchers ‘Grow’ Cartilage from Bone Marrow Stem Cells

2 months 4 days

(Swiss Info) – Scientists at the University Hospital of Basel have produced joint cartilage from bone marrow stem cells by preventing them from becoming bone tissue. Under normal conditions the mesenchymal stem/stromal cells from the bone marrow of adults develop into cartilage tissue which then remodels into bone tissue. This is similar to what happens after a fracture, for example.

China Will Always Be Bad at Bioethics

2 months 4 days

(Foreign Policy) – As China’s advances in biotechnology come closer to the secrets of life, they pose tantalizing prospects for the future. But when standards for research on the latest technological frontiers are being set by a government that has always prioritized power over ethics, there’s also plenty of cause for concern.

Biases in Forensic Experts

2 months 4 days

(Science) – Forensic evidence plays a critical role in court proceedings and the administration of justice. It is a powerful tool that can help convict the guilty and avoid wrongful conviction of the innocent. Unfortunately, flaws in forensic evidence are increasingly becoming apparent. Assessments of forensic science have too often focused only on the data and the underlying science, as if they exist in isolation, without sufficiently addressing the process by which forensic experts evaluate and interpret the evidence.

Outsourcing Is In

2 months 4 days

(Nature) – Alokta Chakrabarti manages drug-candidate identification and discovery for client pharmaceutical companies. As a project team leader at the contract research organization (CRO) ProQinase in Freiburg, Germany, she spends her days meeting clients, working at the bench, flying through data analysis — and chasing a lot of deadlines. A few decades ago, drug makers did their own discovery work, along with every other element of getting a drug or medical device to the marketplace. But today, nearly anything that a pharmaceutical, biotechnology or medical-device business needs to do — from designing assays to planning and running clinical trials — can and may be outsourced to CROs.

The Surgeon Who Experimented on Slaves

2 months 5 days

(The Atlantic) – The man whose name appears in medical textbooks, whose likeness is memorialized in statues, is J. Marion Sims. Celebrated as the “father of modern gynecology,” Sims practiced the surgical techniques that made him famous on enslaved women: Lucy, Anarcha, Betsey, and the unknown others. He performed 30 surgeries on Anarcha alone, all without anesthesia, as it was not yet widespread. He also invented the modern speculum, and the Sims’s position for vaginal exams, both of which he first used on these women.

There’s a 24-Fold Rise in Organ Transplants from Drug Overdose Donors

2 months 5 days

(CNN) – As the opioid epidemic has skyrocketed in the United States, a rise in the number of drug overdose deaths has contributed to a rise in organ transplants, made possible by overdose-death donors, across the country. A study published in the journal Annals of Internal Medicine on Monday now reveals just how much of an increase there has been in the number of overdose-death donors, from being only 1.1% of all donors in 2000 to 13.4% in 2017.

Organs from Drug Overdose Victims Could Save the Lives of Patients on Transplant Waiting List

2 months 6 days

(Los Angeles Times) – The widening tragedy that is the U.S. drug-overdose epidemic could have an improbable silver lining: for the 120,000 desperate Americans on the waiting list for a donated organ, the line could get a little shorter. In 2000, only 149 organs from donors who suffered a fatal drug overdose were transplanted into patients waiting for a replacement kidney, heart, liver or lungs. In 2016, overdose victims donated 3,533 such organs for transplant.

Nursing Homes Routinely Refuse People on Addiction Treatment–Which Some Experts Say Is Illegal

2 months 6 days

(STAT News) – Nursing facilities routinely turn away patients seeking post-hospital care if they are taking medicine to treat opioid addiction, a practice that legal experts say violates the Americans with Disabilities Act. After discharge from the hospital, many patients require further nursing care, whether for a short course of intravenous antibiotics, or for a longer stay, such as to rehabilitate after a stroke. But STAT has found that many nursing facilities around the country refuse to accept such patients, often because of stigma, gaps in staff training, and the widespread misconception that abstinence is superior to medications for treating addiction.

Barbara Bush’s End-of-Life Decision Stirs Debate Over ‘Comfort Care’

2 months 6 days

(Kaiser Health News) – As she nears death at age 92, former first lady Barbara Bush’s announcement that she is seeking “comfort care” is shining a light — and stirring debate — on what it means to stop trying to fight terminal illness. Bush, the wife of former President George H.W. Bush, has been suffering from congestive heart failure and chronic obstructive pulmonary disease, according to family spokesman Jim McGrath. In a public statement Sunday, the family announced she has decided “not to seek additional medical treatment and will focus on comfort care.”

When Curing a Disease with Gene Therapy Is Bad Business

2 months 1 week

(MIT Technology Review) – Just today, we saw GlaxoSmithKline sell off its pipeline of gene therapies for rare disease to a London startup called Orchard Therapeutics for a 20 percent stake in the young company. The treatments Glaxo didn’t want were bona fide miracles: one-and-done cures that replace a broken gene and save a life. One was Strimvelis, a therapy for a rare immune deficiency that’s been curing kids outright.

Bystander Risk, Social Value, and Ethics of Human Research

2 months 1 week

(Science) – Two critical, recurring questions can arise in many areas of research with human subjects but are poorly addressed in much existing research regulation and ethics oversight: How should research risks to “bystanders” be addressed? And how should research be evaluated when risks are substantial but not offset by direct benefit to participants, and the benefit to society (“social value”) is context-dependent? We encountered these issues while serving on a multidisciplinary, independent expert panel charged with addressing whether human challenge trials (HCTs) in which healthy volunteers would be deliberately infected with Zika virus could be ethically justified. Based on our experience on that panel, which concluded that there was insufficient value to justify a Zika HCT at the time of our report, we propose a new review mechanism to preemptively address issues of bystander risk and contingent social value.

Pet Cloning Is Bringing Human Cloning a Little Bit Closer

2 months 1 week

(MIT Technology Review) – Alarm bells went off in my head. Must wasn’t just cloning a pet. She was trying to preserve a lost child. It seemed awfully close to a real human cloning scenario, one in which a heartbroken parent tries to replace a son or daughter who dies early. I shot a question to Jose Cibelli, an animal cloning scientist at Michigan State University: Is it time to worry about human cloning again? Cibelli quickly e-mailed back: “Yes.”

What If There Is No Ethical Way to Act in Syria Now?

2 months 1 week

(The Atlantic) – For seven years now, America has been struggling to understand its moral responsibility in Syria. For every urgent argument to intervene against Syrian President Bashar al-Assad to stop the mass killing of civilians, there were ready responses about the risks of causing more destruction than could be averted, or even escalating to a major war with other powers in Syria. In the end, American intervention there has been tailored mostly to a narrow perception of American interests in stopping the threat of terror. But the fundamental questions are still unresolved: What exactly was the moral course of action in Syria? And more urgently, what—if any—is the moral course of action now?

Puerto Rico’s Slow-Going Recovery Means New Hardships for Dialysis Patients

2 months 1 week

(Kaiser Health News) – Hurricane Maria totaled Vieques’ hospital, which housed the island’s only dialysis clinic. That set off an ongoing crisis for patients with kidney failure such as Garcia — who cannot survive without dialysis and for whom the thrice-weekly round trip to a dialysis center in Humacao on Puerto Rico’s main island, including treatment, takes at least 12 hours.

Canadian Pharmacy to Be Fined Millions for Illegal Imports

2 months 1 week

(ABC News) – Canada Drugs has filled millions of prescriptions by offering itself as a safe alternative for patients to save money on expensive drugs, and its founder, Kristian Thorkelson, has been hailed as an industry pioneer for starting the company in 2001. But U.S. prosecutors say Canada Drugs’ business model is based entirely on illegally importing unapproved and misbranded drugs not just from Canada, but from all over the world. The company has made at least $78 million through illegal imports, including two that were counterfeit versions of the cancer drugs Avastin and Altuzan that had no active ingredient, prosecutors said.

In a Bid to Promote Stem Cell Therapies, Health Officials Open a New Door for Promising Contenders

2 months 1 week

(STAT News) – When someone experiences a severe head injury, it’s not just the initial blow that batters the brain. The body’s immune response can go haywire, overwhelming and sometimes continuing to damage the brain for months. Surgeons at Houston’s Memorial Hermann Hospital believe they might have a novel way to prevent that ongoing harm: by drawing bone marrow cells, including stem cells, from patients and infusing them back into their bodies.

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