News from Bioethics.com

The Coming Care Crisis as Kids with Autism Grow Up

3 months 3 days

(The Atlantic) – Although people with autism have always existed, the United States saw a tremendous spike in diagnoses beginning in the late 1990s, due in part to increased public awareness of the disorder and improvements in evaluation. About one in every 59 children is diagnosed with autism, according to the Centers for Disease Control and Prevention, up from one in every 150 in 2000. About half a million people on the autism spectrum will legally become adults over the next decade, a swelling tide for which the country is unprepared. When they turn 21, these people leave behind all the programming and funding they received under the Individuals With Disabilities Education Act and enter a labyrinth of government services that vary wildly from state to state.

How Drug Company Ads Downplay Risks

3 months 3 days

(Scientific American) – However, the FDA’s assumption that more risk information leads to greater concern about risk is misplaced. Across six experiments, comprising of over 3000 US participants, we reliably find that when drug commercials include all side effects (both major and minor), in line with the FDA’s regulations, consumers’ judged the overall severity of drug side effects to be lower than when exposed to only major side effects. This lowered assessment of severity led consumers to prefer the drug more—and made them willing to pay more for the drug.

With One Manufacturer and Little Money to Be Made, Supplies of a Critical Cancer Drug Are Dwindling

3 months 3 days

(STAT News) – It wasn’t just one doctor’s office. There’s a critical national shortage of BCG, a biologic drug that has been used for decades and that is a remarkably effective medicine. Many smaller clinics have already run out of the lifesaving drug, and larger hospitals — including New York’s Memorial Sloan Kettering Cancer Center, where Field is being treated — have changed their policies on distributing BCG to prioritize newly diagnosed patients with active cancers.

Ebola Vaccine Will Be Provided to Women Who Are Pregnant, Marking Reversal in Policy

3 months 3 days

(STAT News) – Women who are pregnant and lactating, as well as children under the age of 1, will be offered access to an experimental Ebola vaccine in the Democratic Republic of the Congo, officials said Wednesday, marking the reversal of a controversial policy that had drawn fire from public health experts. The decision was made by a committee advising the Congolese Ministry of Health, but received the support of the World Health Organization. The decision to exclude pregnant women from the vaccination program sparked blowback from some experts, with some calling the policy “indefensible.”

Criminal Case Spurs a Rethink of Euthanasia for Mental Illness

3 months 3 days

(Medscape) – The recent launch of a criminal investigation into a case of medically assisted death for psychiatric illness in Belgium is shining a spotlight on growing concerns — even among supporters — about the controversial practice. The charges, which are reportedly the first criminal investigation of medically assisted euthanasia in that country since it was legalized in 2002, are related to the 2010 death of a 38-year-old woman with Asperger syndrome, a mild form of autism.

Gene Therapy Could Treat Rare Brain Disorder in Unborn Babies

3 months 3 days

(The Guardian) – Scientists are developing a radical form of gene therapy that could cure a devastating medical disorder by mending mutations in the brains of foetuses in the womb. The treatment, which has never been attempted before, would involve doctors injecting the feotus’s brain with a harmless virus that infects the neurons and delivers a suite of molecules that correct the genetic faults. Tests suggest that the therapy will be most effective around the second trimester, when their brains are in the early stages of development.

Codeine: An Opioid Threat to Kids

3 months 4 days

(Medical Xpress) – Codeine has often been prescribed to kids to ease pain after a surgery like tonsillectomy. It’s also been part of the formula in some prescription and over-the-counter cough syrups that are still available on drugstore shelves in some states. But there’s no evidence that it does anything to stop coughing. Rather, it can make kids drowsy. In fact, codeine’s effects vary greatly from one child to another.

FDA: Young-Blood Transfusions Provide ‘No Proven Clinical Benefit’ for Aging, Alzheimer’s

3 months 4 days

(STAT News) – The quest to rejuvenate aging people with the blood of young donors has generated paying customers, captured the popular imagination, and, now, prompted a warning from the Food and Drug Administration. The agency on Tuesday said in a statement that plasma infusions from young people provide “no proven clinical benefit” against normal aging, Alzheimer’s disease, or a host of other diseases — despite a surge in their promotion for those purposes.

Supreme Court Deals a Fatal Blow to Maryland Drug ‘Price Gouging’ Law

3 months 4 days

(STAT News) – The Supreme Court on Tuesday dealt a fatal blow to an expansive Maryland law that aimed to bar drug makers from “price gouging” consumers. The law, which the Maryland General Assembly passed in 2017, would have prohibited generic drug manufacturers from raising prices in a manner the state deemed “unconscionable.” It was nullified in April 2018, when an appeals court held it was unconstitutional because it regulated commerce beyond Maryland’s borders.

Gene Therapy First to ‘Halt’ Most Common Cause of Blindness

3 months 4 days

(BBC) – A woman from Oxford has become the first person in the world to have gene therapy to try to halt the most common form of blindness in the Western world. Surgeons injected a synthetic gene into the back of Janet Osborne’s eye in a bid to prevent more cells from dying. It is the first treatment to target the underlying genetic cause of age-related macular degeneration (AMD).

Japan Approves Test of iPS Cells for Treating Spinal Injuries

3 months 5 days

(Reuters) – Japanese scientists will test the use of human-induced pluripotent stem cells (iPS) to treat spinal cord injuries, a health ministry panel that approved the research project said on Monday.  The research team from Tokyo’s Keio University planned to inject about two million iPS cells into the damaged areas of an individual patient and review the results over the course of a year, according to the plan approved by the health ministry.

Anesthetists Say Patients at Risk after Flawed Oxygen Guidelines

3 months 5 days

(The Guardian) – Patients may have been placed at risk of serious harm because of flawed advice to administer highly concentrated oxygen after surgery, leading anaesthetists have said. The concerns relate to World Health Organization guidelines to administer 80% oxygen to patients in the hours after an operation. The advice was introduced in 2016 after a series of influential clinical trials led by an Italian surgeon, Mario Schietroma, suggested that high-dose oxygen reduced the risk of infections. However, a new analysis has uncovered troubling statistical anomalies in 38 scientific papers authored by Schietroma, raising doubts about the credibility of the data and prompting calls for an investigation.

The Devastating Allure of Medical Miracles

3 months 5 days

(Wired) – Consent in hand transplants is devilishly slippery: Can a person who has lost a hand properly weigh the allure of soon regaining such a vital part of themself against the seemingly distant probabilities of suffering treatment’s possible harms? Levin says this is best addressed by confronting the patient with the grimmest picture possible of the risks and by appointing them an independent patient advocate. James Benedict, a bioethicist at Duquesne University who has studied consent and the US hand transplant community for more than seven years, has a different concern. At this point, he says, “I’m not even sure it’s possible to give informed consent, because the outcome data is so sparse. How can you give consent about accepting risks if you don’t even know what they are?”

Once a ‘Refugee,’ a Gene Therapy Pioneer Finds a Renewed Calling as the Field Advances

3 months 5 days

(STAT News) – At the turn of the century, the once-promising idea of replacing a faulty gene with a corrective copy took a tragic turn. A 1999 clinical trial resulted in the death of an 18-year-old patient, dashing the ambitions of researchers and beginning a years-long fallow period in which finding support — and funding — for gene therapy research was more difficult than ever. “I refer to the group that continued to work at it as ‘refugees,’” said Dr. James Wilson, a physician and scientist at University of Pennsylvania who has studied gene therapy for more than three decades. “That’s how we would refer to one another.”

The Latest Instagram Influencer Frontier? Medical Promotions

3 months 1 week

(Vox) – These Instagram ads, for which influencers can be paid an estimated $1,000 per 100,000 followers, are selling not just a product but an entire lifestyle. Rather than buying a single-page ad or a minute-long TV or radio spot, companies benefit from the candor and storytelling on influencers’ feeds. However, selling a pair of shoes or luggage as part of a lifestyle is far different from selling pharmaceuticals, medical devices, and other health-related products. Nevertheless, pharmaceutical and biotech companies and Silicon Valley health startups see the opportunity Instagram presents and are increasingly using influencer-advertising as a way to increase their bottom lines.

Vaping Gone Viral: The Astonishing Surge in Teens’ E-Cigarette Use

3 months 1 week

(Vox) – Vaping has exploded in popularity in recent years — but not among the people it was intended for. Rather than adults trying to quit smoking, young people who’ve never picked up a cigarette are now vaping in record numbers.  According to a new Vital Signs report, published by the Centers for Disease Control and Prevention, in 2018, some 4.9 million high school and middle school students used tobacco in the last 30 days, an increase from 3.6 million in 2017. E-cigarettes were the most popular tobacco product among the children and adolescents.

UN: Experts to Develop Oversight Standards for Gene Editing

3 months 1 week

(ABC News) – The World Health Organization is convening an expert meeting next month to develop global standards for the governance and oversight of human gene editing, months after a Chinese researcher rocked the scientific community with his announcement that he had created the world’s first gene-edited babies.

Nearly 1,000 Madagascar Children Dead of Measles Since October–WHO

3 months 1 week

(Reuters) – At least 922 children and young adults have died of measles in Madagascar since October, despite a huge emergency vaccination program, the World Health Organization (WHO) said on Thursday.  The number of deaths is based on official numbers, but these are likely to be very incomplete, as is the current total of infections, at 66,000, Dr. Katrina Kretsinger of WHO’s expanded program on immunization told a news briefing.

Flu Shots This Winter Providing Moderate Levels of Protection, CDC Data Show

3 months 1 week

(STAT News) – This year’s flu shot is protecting about half of the people in the United States who have been vaccinated from getting sick enough from influenza to need medical care, according to new data, suggesting it’s providing moderate levels of protection. Interim estimates from the Centers for Disease Control and Prevention indicate the vaccine offers about 47 percent protection against all influenza infections and 46 percent protection against H1N1 viruses, which are causing the lion’s share of illnesses this year in most parts of the United States.

Ebola Vaccine Offered in Exchange for Sex, Congo Taskforce Meeting Told

3 months 1 week

(The Guardian) – An unparalleled Ebola vaccination programme in the Democratic Republic of the Congo has become engulfed in allegations of impropriety, amid claims that women are being asked for sexual favours in exchange for treatment. Research by several NGOs has revealed that a deep mistrust of health workers is rife in DRC and gender-based violence is believed to have increased since the start of the Ebola outbreak in August.

Caster Semenya: IAAF Denies It Will Tell Court Athletes Like South African Should Be Classed as Male

3 months 1 week

(BBC) – Athletics’ governing body has denied it will tell a court female athletes with high testosterone levels like Caster Semenya should be classified as male. World and Olympic 800m champion Semenya is challenging a proposed IAAF rule that aims to restrict the levels of testosterone in female runners. The case will be heard at the Court of Arbitration for Sport (Cas) next week.

EXIT Reports over 1,200 Assisted Suicides in 2018

3 months 1 week

(Swiss Info) – The Swiss assisted suicide organisation EXIT helped a total of 1,204 people end their lives in 2018 – a sizeable jump compared to the previous year.  EXIT Deutsche Schweizexternal link, which covers German-speaking Switzerland and canton Ticino, reported on Tuesday that 905 people had used its services last year to terminate their lives – 172 more than in 2017, a 23% increase. At the end of 2018, membership of the organisation stood at 120,117 – also a big jump on previous numbers (+13,000).

A.I. Shows Promise Assisting Physicians

3 months 1 week

(New York Times) – Each year, millions of Americans walk out of a doctor’s office with a misdiagnosis. Physicians try to be systematic when identifying illness and disease, but bias creeps in. Alternatives are overlooked. Now a group of researchers in the United States and China has tested a potential remedy for all-too-human frailties: artificial intelligence. In a paper published on Monday in Nature Medicine, the scientists reported that they had built a system that automatically diagnoses common childhood conditions — from influenza to meningitis — after processing the patient’s symptoms, history, lab results and other clinical data.

Embryo Editing for Higher IQ Is a Fantasy. Embryo Profiling for It Is Almost Here

3 months 1 week

(STAT News) – A different approach aimed at enhancing IQ is far less fantastic. We’re calling it embryo profiling, and it could be done today. Embryo profiling capitalizes on the ability to add up the minuscule effects associated with thousands of genetic variants to create what’s called a polygenic score. On the basis of this score, researchers can make predictions about an embryo’s likelihood of exhibiting given traits, from developing cardiovascular disease to going far in school.

‘We Don’t Have Any Data’: Experts Raise Questions About Facebook’s Suicide Prevention Tools

3 months 1 week

(STAT News) – Over the past few years, Facebook has stepped up its efforts to prevent suicide, but its attempt to help people in need has opened the tech giant to a series of issues concerning medical ethics, informed consent, and privacy. It has also raised a critical question: Is the system working?

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