News from Bioethics.com

The Cost of Not Knowing a Huntington’s Diagnosis

12 hours 14 min

(The Atlantic) – When Jennifer Leyton was going through IVF, her doctors would tell her very little. They turned off the ultrasound screen facing her so she could not count the number of eggs retrieved. They kept secret the number of fertilized embryos. They did not even say how many they transferred to her womb. This secrecy might have been maddening for many IVF patients, but for Leyton, it was her choice. She chose secrecy because she wanted to avoid finding out whether she had inherited a mutation for Huntington’s.

Cyclone Idai: “The Scale of Devastation Is Enormous”

12 hours 17 min

(Vox) – Many of the affected areas have been cut off from communications. The charity Save the Children reports that 100,000 people still need to be rescued near Beria. People are waiting on rooftops to be rescued. There are reports that flying sheet metal roofs decapitated people during the storm, which made landfall with winds in excess of 100 mph, perhaps as high as 124 mph.

Censorship or Social Responsibility? Amazon Removes Some Books Peddling Vaccine Misinformation

12 hours 32 min

(The Washington Post) – Amazon has now joined other companies navigating the line between doing business and censoring it, in an age when, experts say, misleading claims about health and science have a real impact on public health. NBC Nightly News reported that Amazon was pulling books touting false information about autism “cures” and vaccines. The e-commerce giant confirmed Monday to The Washington Post that several books are no longer available, but it would not release more specific information

An AIDS Therapy Involving Parasite Injections Was Discredited. China Is Reviving It–for Cancer

12 hours 36 min

(STAT News) – American surgeon Henry Heimlich is best known for inventing a way to rescue choking victims, but a quarter-century ago, he was vilified for promoting a fringe treatment for AIDS and Lyme disease. Called malarial therapy, it involved injecting patients with the malaria-causing parasite, supposedly to stimulate their immune systems. The U.S. Centers for Disease Control and Prevention issued a report saying the procedure “cannot be justified,” and another critic compared its use to the discredited practice of bleeding patients with leeches. Despite the criticism, Heimlich launched trials of the therapy in HIV patients in Mexico and China in the 1990s. Now, the scientist who led the Chinese study is using malarial therapy again — this time to treat cancer patients.

Online Abortion Pill Provider Ordered to Cease Delivery by FDA

12 hours 50 min

(CNN) – A European organization that provides doctor-prescribed abortion pills by mail is under order by the US Food and Drug Administration to stop deliveries. The federal agency sent a warning letter to Aid Access this month requesting that it “immediately cease causing the introduction of these violative drugs into U.S. Commerce.” “The sale of misbranded and unapproved new drugs poses an inherent risk to consumers who purchase those products,” the letter says. “Drugs that have circumvented regulatory safeguards may be contaminated; counterfeit, contain varying amounts of active ingredients, or contain different ingredients altogether.”

A Fertility App Bills Itself as Contraception, Raising Questions About Marketing and Efficacy

1 day 11 hours

(STAT News) – A new fertility tracking app, Dot, is billing itself as form of contraception — and touting the results of a new efficacy study that shows the app may be up to 99 percent effective as a form of birth control. With statistics like that, Dot — part of a surge in fertility and contraception apps — would appear to be one of the most effective birth control tools available. But there’s also significant debate over how to measure the effectiveness of these tools, as well as questions about which apps should be available in the first place.

‘Pill Mill’ Doctor Among First Released Under Law for Dying Prisoners

1 day 12 hours

(Houston Chronicle) – But on Thursday, Evans got out roughly two years earlier than expected. He became one of the first prisoners to benefit from a compassionate release provision of the federal First Step Act, shepherded through Congress late last year by Texas Republican Sen. John Cornyn. To Evans’ legal team, his release represents an early victory for the new law, but to advocates and policy wonks it’s a small step for a new measure that’s already running into unexpected roadblocks.

The Fertility Doctor’s Secret

1 day 12 hours

(The Atlantic) – In the time since Woock’s half siblings got in touch with her, they have broken the news dozens more times. The children Cline fathered with his patients now number at least 48, confirmed by DNA tests from 23andMe or Ancestry.com. (Several have a twin or other siblings who likely share the same biological father but haven’t been tested.) They keep in touch through a Facebook group. New siblings pop up in waves, timed perversely after holidays like Christmas or Mother’s Day or Father’s Day, when DNA tests are given as well-intentioned gifts.

Abortions by Mail: The FDA Is Going After Online Pill Providers

4 days 17 hours

(Vox) – Legal versions of mifepristone and misoprostol have been available to patients in the US since 2000 — but patients can’t just get them at any pharmacy. The drugs are only given out by certified health care providers in a doctor’s office, clinic, or hospital. The providers need to sign a waiver that they’ll ensure patients have access to a surgical abortion or emergency care if anything goes wrong — part of an FDA risk mitigation program called REMS, which is common to higher-risk medications. When retailers sell unapproved versions of drugs outside of the REMS program — which the FDA says Aid Access and Rablon have — “FDA is well within its regulatory authority to take action,” said Tim Mackey, a UC San Diego School of Medicine expert on counterfeit drugs. (In the case of Aid Access, the pills are imported from India.)

‘Definitely Not an Anti-Vaxxer’: Some Parents Push Back Against Recommended Vaccine Schedule

4 days 17 hours

(CNN) – The squabble is often painted as two-sided: In one camp, the medical establishment, backed by science, strongly promoting the vaccination of children against 14 childhood diseases by age 2. In the other, a small but vocal minority — the so-called anti-vaxers — shunning the shots, believing the risks of vaccines outweigh the dangers of the diseases.
The notion that there are two opposing sides obscures a large middle ground occupied by up to one-quarter of parents, who believe in vaccinating their children but, like the Imamuras, choose to do so more gradually. They worry about the health impact of so many shots in so short a period, and in some cases they forgo certain vaccines entirely.

Americans Are Going Bankrupt from Getting Sick

4 days 17 hours

(The Atlantic) – Medical debt is a uniquely American phenomenon, a burden that would be unfathomable in many other developed countries. According to a survey published this month in the American Journal of Public Health, nearly 60 percent of people who have filed for bankruptcy said a medical expense “very much” or “somewhat” contributed to their bankruptcy. That was more than the number who cited home foreclosure or student loans. (The survey respondents could choose multiple factors that contributed to their bankruptcy.)

Ebola Response Is Working, WHO Director-General Says, Amid Criticism and Violence

4 days 17 hours

(STAT News) – The director-general of the World Health Organization said Thursday that health officials are making progress against the Ebola outbreak in the Democratic Republic of the Congo and that the footprint of the outbreak zone is actually contracting. The cautiously hopeful remarks from Tedros Adhanom Ghebreyesus, who visited the outbreak zone last week, came just hours after the most recent attack on an Ebola treatment center, one in a series that has plagued efforts to bring this outbreak, now in its eighth month, to an end.

Victims Sterilized Under Japan’s Eugenics Law to Get ¥3.2 Million Each Under State Redress Plan

4 days 18 hours

(The Japan Times) – Ruling and opposition party lawmakers on Thursday decided on a bill to provide ¥3.2 million ($28,700) in state redress to every surviving victim of a state sterilization program that was conducted under a now-defunct 1948 eugenics law. The bill marks progress toward offering relief to the victims of the program that only came to an end in 1996, but the level of compensation was immediately criticized as insufficient by lawyers involved in damages suits filed by victims across the country.

Jury Awards $29 Million to California Woman Who Claimed Johnson & Johnson Baby Powder Caused Cancer

5 days 11 hours

(ABC News) – A California jury awarded $29 million on Wednesday to a woman who sued Johnson & Johnson, claiming that asbestos in its talcum-based baby powder caused her cancer. An Alameda County jury in Oakland, California, held Johnson & Johnson responsible for Teresa Leavitt’s mesothelioma — a cancer linked to asbestos exposure — through her use of baby powder.

‘They Don’t Want His Story to End’: Efforts to Save the Sperm of the Deceased Come with Heartache and Tough Questions

5 days 11 hours

(STAT News) – The Zhus’ plight has reignited a debate around what is known as postmortem sperm retrieval, or posthumous sperm procurement, a procedure that was first attempted in 1980 and is typically considered when a young man dies unexpectedly. The Zhus’ case is particularly complicated because it involves a request from parents instead of a partner or spouse, whose directives hospitals are more inclined to follow.

Will Machines Be Able to Tell When Patients Are About to Die?

5 days 11 hours

(Wired) – Now we’re talking about machines. An 18-layer DNN learning from the electronic health records of almost 160,000 patients was able to predict the time until death on a test population of 40,000 patient records, with remarkable accuracy. The algorithm picked up predictive features that doctors wouldn’t, including the number of scans, particularly of the spine or the urinary system, which turned out to be as statistically powerful, in terms of probability, as the person’s age. The results were quite powerful: more than 90 percent of people predicted to die in the following three to twelve months did so, as was the case for the people predicted to live more than 12 months.

New Call to Ban Gene-Edited Babies Divides Biologists

5 days 12 hours

(Science) – Their call, which is endorsed in the same issue of Nature by Francis Collins, director of the U.S. National Institutes of Health, is a departure from statements issued by two global summits on genome editing in 2015 and 2018, a 2017 report from the U.S. National Academies of Sciences, Engineering, and Medicine (NASEM), and a 2018 report from the United Kingdom’s Nuffield Council on Bioethics. None has banned human germline editing, and most have stressed that it holds promise to help correct some heritable diseases. All have warned against using germline editing for cognitive or physical “enhancement” of people. Scientists including Nobel laureate David Baltimore of the California Institute of Technology in Pasadena remain opposed to a moratorium.

Bill Passes to Ban Abortions Based on Gender, Disability

6 days 7 hours

(ABC News) – Kentucky’s Republican-led legislature on Wednesday passed its latest measure to put more restrictions on abortion, setting up another legal fight with abortion-rights defenders. The legislation would ban abortion for women seeking to end their pregnancies because of the gender, race or disability of the fetus. The GOP-dominated Senate voted 32-4 to send the bill to the state’s anti-abortion governor, Republican Matt Bevin.

FDA Proposes New Measures to Crackdown on Youth E-Cigarette Use

6 days 7 hours

(Good Morning America) – The U.S. Food and Drug Administration put out a new proposal Wednesday for how it will crack down on the “epidemic-level rise in youth e-cigarette use.” But some critics say the efforts do not go far enough in preventing young people from vaping. In a statement from FDA Commissioner Scott Gottlieb released Wednesday, the FDA outlined a comprehensive plan to crack down on youth access to flavored e-cigarettes.

Adopt a Moratorium on Heritable Genome Editing

6 days 8 hours

(Nature) – We call for a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children. By ‘global moratorium’, we do not mean a permanent ban. Rather, we call for the establishment of an international framework in which nations, while retaining the right to make their own decisions, voluntarily commit to not approve any use of clinical germline editing unless certain conditions are met.

Appeals Court Says Ohio May Withhold Planned Parenthood Funding

1 week 10 hours

(Reuters) – A divided federal appeals court on Tuesday rejected Planned Parenthood’s constitutional challenge to an Ohio law depriving the organization of state funding because it performs abortions, handing a victory to anti-abortion advocates. In an 11-6 vote, the 6th U.S. Circuit Court of Appeals in Cincinnati overturned a ruling last year by a three-judge panel of the court that the funding ban violated the due process rights of Planned Parenthood affiliates.

Fake Drugs Kill More Than 250,000 Children a Year, Doctors Warn

1 week 10 hours

(The Guardian) – Doctors have called for an urgent international effort to combat a “pandemic of bad drugs” that is thought to kill hundreds of thousands of people globally every year. A surge in counterfeit and poor quality medicines means that 250,000 children a year are thought to die after receiving shoddy or outright fake drugs intended to treat malaria and pneumonia alone, the doctors warned. More are thought to die from poor or counterfeit vaccines and antibiotics used to treat or prevent acute infections and diseases such as hepatitis, yellow fever and meningitis.

23andMe Has a New Type 2 Diabetes Risk Report. Here’s What to Know

1 week 11 hours

(TIME) – Consumer genetics company 23andMe is broadening its health portfolio with a new report on consumers’ genetic risk of developing Type 2 diabetes. More than 30 million Americans have diagnosed or undiagnosed diabetes, according to the most recent federal data. The vast majority of these people — up to 95% — have Type 2 diabetes, meaning their bodies do not use insulin properly.

Heartbreak, Anxiety, Lawsuits: The Egg-Freezing Disaster a Year Later

1 week 1 day

(NBC News) – In the year since the malfunctions, there have been some changes and improvements. Extra precautions have been established at some facilities, including new inspection safeguards, backup tanks and updated monitoring systems. But the failures did not stir a move toward greater government regulation to reassure the growing number of women freezing their eggs. In reporting this four-part series on the egg-freezing industry, NBC News has found that there is no single government agency empowered to crack down on mistakes or malfunctions by fertility centers.

Doctor Delivers End-of-Life News Via ‘Robot,’ Leaving Family Frustrated

1 week 1 day

(U.S.A. Today) – A California hospital delivered end-of-life news to a 78-year-old patient via a robotic machine this week, prompting the man’s family to go public with their frustration.  Ernest Quintana was admitted to the Kaiser Permanente Medical Center emergency department in Fremont, California, on March 3, granddaughter Annalisia Wilharm told USA TODAY in a written message Saturday. The family knew he was dying of chronic lung disease.

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