News from Bioethics.com

Juul’s Convenient Smoke Screen

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(The New York Times) – But in Juul’s case, revisionist history is particularly important, because the way Juul markets itself is central to the question of how it should be treated. Many consumers, investors and ethical technologists would rightly shun a company that knowingly targeted minors with harmful products, and cleaned up its act only after public pressure. But if you believe that Juul had a noble anti-cigarette mission all along, it’s easier to excuse its missteps as the product of innocent naïveté. Unfortunately for Juul, plenty of evidence suggests that the company didn’t always take its public health agenda so seriously.

Cuba Failed to Report Thousands of Zika Virus Cases in 2017

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(New Scientist) – THOUSANDS of Zika virus cases went unreported in Cuba in 2017, according to an analysis of data on travellers to the Caribbean island. Veiling them may have led to many other cases that year. The analysis suggests that Zika infections peaked in Cuba in the second half of 2017, at a time when the virus was waning in mainland North and South America. Cuban authorities didn’t follow the agreed practice of notifying the Pan American Health Organization (PAHO) of the outbreak.

‘CRISPR Babies’ Scientist: ‘I’m Actually Doing Quite Well’

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(STAT News) – The Chinese scientist who shocked the world in November by announcing that twin girls had been born from embryos that he had created using genome editing has told two Western colleagues that, contrary to a flurry of reports that he is under house arrest and possibly even facing the death penalty, he is “actually doing quite well here.” In an email and a phone conversation, He Jiankui of Southern University of Science and Technology told the two scientists, who attended the “CRISPR babies” announcement at the International Summit on Human Genome Editing in Hong Kong, that he is able to read Western news reports about himself, including some earlier this week that he might be facing the death penalty for his work and that he is under armed guard and house arrest.

Banished from Home for Menstrual Cycle, Mother and Two Children Die in Nepali Hut

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(CNN) – A Nepali mother and her two children were found dead Wednesday morning, after being exiled from their family home as part of a criminalized practice where women and girls are made to sleep alone during their menstrual cycle. In sub-zero winter temperatures, Amba Bohora, 35, and her sons aged seven and nine, are believed to have constructed a small fire inside a tiny wooden hut close to their home in rural western Nepal. By the morning all three were dead.

New York Is Fighting Its Worst Outbreak of Measles in Decades

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(NBC) – At Clarkstown Pediatrics in Nanuet, New York, babies are on an accelerated measles vaccination schedule, getting their first shots six months early and their second dose right away. It’s part of a statewide effort to stop several outbreaks of measles from turning into an epidemic. The state has had 167 cases of the highly infectious virus since September, making it the worst year for measles since the 1990s.

Drug Overdose Deaths Among Women Ages 30-64 in the United States Increased by 260 Percent: CDC

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(ABC News) – As the number of drug overdose deaths continues to rise, the social awareness of the epidemic has as well. Even celebrities are opening about their addiction issues. The drug epidemic, however, has affected far more people than previously thought. Death by drug overdose is classically more common in men but a report released by the Centers for Disease Control and Prevention on Thursday shows that women, specifically middle-aged women, are also increasingly affected.

The FDA Is Going After Stem Cell Clinics That Peddle Unproven Treatments

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(Vox) – Currently, the only stem cell therapy approved by the FDA is a bone marrow transplant that uses pluripotent stem cells to treat cancers of the blood and bone marrow. But doctors in the Cell Surgical Network have moved ahead with using cells for autoimmune, neurologic, and other serious conditions.  And there is a growing number of cases of adverse effects. In 2016, an elderly woman went blind after receiving an injection of stem cells to treat her macular degeneration. She received the treatment at the Stem Cell Center of Georgia — an affiliate of Berman’s Cell Surgical Network.  More reports of ill-fated procedures have since surfaced across the country, the worst resulting in kidney failure and paraplegia.

A Father’s Fight to Help His Sons–And Fix Clinical Trials

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(Nature) – Nick plunged himself into trying to find some relief for his son. As it turned out, researchers had identified a possible treatment. But the drug was being given to help infants survive a different condition — it wasn’t approved for AKU. And the path to approval was blocked by a considerable obstacle: the need for a full-scale randomized clinical trial. That’s expensive and difficult enough for medicines used to treat common diseases. It’s much harder for a condition that is almost unheard of.

To Get Mental Health Help for a Child, Desperate Parents Relinquish Custody

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(Kaiser Health News) – Two-thirds of states don’t keep track of how many families give up custody to help a child get mental health services. But a study by the Government Accountability Office found that, back in 2001, families in 19 states relinquished nearly 13,000 children. Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a 2015 state law aimed at preventing it. And new data collected by the University of Maryland for the federal government finds that Illinois is not alone in failing to address this issue.

Unethical Experiments’ Painful Contributions to Today’s Medicine

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(CNN) – He’s experiments, which are still clouded with the uncertainty of his claims and his whereabouts, open a Pandora’s box of questions around ethics in experiments with humans — even though these dilemmas aren’t new. Historic examples of human experimentation include wartime atrocities by Nazi doctors that tested the limits of human survival. Another led to the creation of the hepatitis B vaccine prototype. Wendell Johnson, who made several contributions to the field of communication disorders, tried to induce stuttering in normally fluent children. In the 1940s, prisoners in Illinois were infected with malaria to test anti-malaria drugs.

Rwanda Deploys Officials to Enforce Ban on Skin Lightening Creams

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(CNN) – The Rwandan government is sending officials across the country to enforce its ban on skin lightening and bleaching products. The East African country is leading a campaign against skin bleaching and substandard cosmetics, particularly products that include hydroquinone, a spokesman from the Rwanda Standards Board told CNN.

Europe’s Top Rights Court to Hear Belgian Euthanasia Case

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(ABC News) – Europe’s top human rights court has agreed to hear a case being brought against Belgium by a man whose mother was euthanized in 2012 for depression, the second case that implicates one of Belgium’s leading euthanasia doctors. In a statement Tuesday, lawyers for Tom Mortier said they brought their case to the European Court of Human Rights in Strasbourg after Belgian authorities declined to pursue it.

U.S. Cancer Death Rate Hits Milestone: 25 Years of Decline

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(STAT News) – The U.S. cancer death rate has hit a milestone: It’s been falling for at least 25 years, according to a new report. Lower smoking rates are translating into fewer deaths. Advances in early detection and treatment also are having a positive impact, experts say. But it’s not all good news. Obesity-related cancer deaths are rising, and prostate cancer deaths are no longer dropping, said Rebecca Siegel, lead author of the American Cancer Society report published Tuesday.

Alzheimer’s Attack on the Brain May Vary with Race

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(Scientific American) – Research on Alzheimer’s has mainly focused on Caucasians. New findings, however, suggest the disease process that leads to dementia may differ in African–Americans. According to a study published Monday in JAMA Neurology, the brains of African–Americans diagnosed with Alzheimer’s have less buildup of a protein called tau—one of the two hallmark proteins that characterize the disease.

23andMe Will Add Weight-Loss Advice to Its DNA-Testing Services

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(Bloomberg) – Consumer DNA-testing giant 23andMe Inc. plans to add new wellness offerings it hopes will help its customers shed a few pounds, but some genetics experts say the jury is still out on the science behind the products. On Tuesday, the Mountain View, California-based company announced a partnership with Lark Health, an artificial-intelligence coaching service that delivers personalized advice for weight loss and diabetes prevention via an app. Lark will allow customers to incorporate weight-related genetic data from 23andMe into its service.

AI Face-Scanning App Spots Signs of Rare Genetic Disorders

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(Nature) – In a paper published on 7 January in Nature Medicine, researchers describe the technology behind the diagnostic aid, a smartphone app called Face2Gene. It relies on machine-learning algorithms and brain-like neural networks to classify distinctive facial features in photos of people with congenital and neurodevelopmental disorders. Using the patterns that it infers from the pictures, the model homes in on possible diagnoses and provides a list of likely options. Doctors have been using the technology as an aid, even though it’s not intended to provide definitive diagnoses. But it does raise a number of ethical and legal concerns, say researchers. These include ethnic bias in training data sets and the commercial fragmentation of databases, both of which could limit the reach of the diagnostic tool.

Chinese Scientist Was Told Not to Create World’s First Gene-Edited Babies

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(CNN) – Everyone he talked to — which was not many people — had said “don’t go there,” “don’t do it,” explained Robin Lovell-Badge of the UK research facility the Francis Crick Institute, who organized the scientific summit in Hong Kong during which the news broke in November. “He had already been told not to proceed,” he said. The announcement came on the eve of this summit, the Second International Summit on Human Genome Editing. Two days later, He defended his work on the scientific stage and announced that a second pregnancy using the technology was underway.

Chinese Scientist Criticized for Risking ‘Gene-Edited’ Babies’ Lives

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(Reuters) – A leading geneticist who ran the conference where a Chinese scientist said he had made the world’s first “gene-edited” babies condemned him on Monday for potentially jeopardizing lives and having no biology training. Robin Lovell-Badge, organizer of the November 2018 event where China’s He Jiankui made his controversial presentation, described him as a rich man with a “huge ego” who “wanted to do something he thinks will change the world”.

Tainted Drugs: When Medicine Makes Patients Sicker

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(ABC News) – The Food and Drug Administration is supposed to inspect all factories, foreign and domestic, that produce drugs for the U.S. market. But a KHN review of thousands of FDA documents — inspection records, recalls, warning letters and lawsuits — reveals how drugs that are poorly manufactured or contaminated can reach consumers.

Baby DNA Tests Raise as Many Questions as Answers

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(The Washington Post) – The tremendous potential — and concerns — over genome sequencing intensify at the beginning of life, when the genetic manual for a person’s entire life could guide their lifelong care, perhaps long before symptoms of disease even develop. But it also raises deep questions: Will the information provide clear, useful answers on what medical actions to take? Are parents sacrificing their children’s autonomy by making such a consequential decision when they are newborns? Does more information improve health and save lives, or increase unnecessary tests and parental worries and, potentially, alter the bond between parent and child?

As Hospitals Post Sticker Prices Online, Most Patients Will Remain Befuddled

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(Kaiser Health News) – While more information is always welcome, the new data will fall short of providing most consumers with usable insight. That’s because the price lists displayed this week, called chargemasters, are massive compendiums of the prices set by each hospital for every service or drug a patient might encounter. To figure out what, for example, a trip to the emergency room might cost, a patient would have to locate and piece together the price for each component of their visit — the particular blood tests, the particular medicines dispensed, the facility fee and the physician’s charge, and more.

Johns Hopkins, Bristol-Myers Must Face $1 Billion Syphilis Infections Lawsuit

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(Reuters) – A federal judge in Maryland said The Johns Hopkins University, Bristol-Myers Squibb Co (BMY.N) and the Rockefeller Foundation must face a $1 billion lawsuit over their roles in a 1940s U.S. government experiment that infected hundreds of Guatemalans with syphilis. In a decision on Thursday, U.S. District Judge Theodore Chuang rejected the defendants’ argument that a recent Supreme Court decision shielding foreign corporations from being sued in U.S. courts over human rights abuses abroad also applied to domestic corporations absent Congressional authorization.

Why So Many Women Travel to Denmark for Fertility Treatments

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(TIME) – Like thousands of women in Europe each year, Ryan turned to Denmark. Today, the Nordic country of 5.7 million people has the greatest proportion of babies born through assisted reproductive technology (ART) — while approximately 1.7% of all infants born in the U.S. are conceived using ART, an estimated 8 to 10% of Danish babies are born thanks to these techniques — but it’s not just the residents who benefit from its treatment options, notably its booming sperm industry. With some of the world’s most liberal legislation on fertility treatment, as well as a less stigmatized culture around the procedures, Denmark has become an attractive destination for women from other countries as well.

Hawaii Allowing Medically Assisted Suicide Takes Effect

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(Miami Herald) – Hawaii’s new medically assisted suicide law has gone into effect, but few doctors and pharmacies are willing to prescribe and dispense the life-ending medications. Hawaii Pacific Health and The Queen’s Medical Center in Honolulu said their pharmacies will not fill the prescriptions and hospitalized patients will not be able to take the lethal drugs on their campuses, the Honolulu Star-Advertiser reported Tuesday.

Human Genome Editing: Ask Whether, Not How

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(Nature) – In calling for standards for producing such ‘CRISPR-edited’ babies, these leaders have shunted aside a crucial and as-yet-unanswered question: whether it is (or can ever be) acceptable to genetically engineer children by introducing changes that they will pass on to their own offspring. That question belongs not to science, but to all of humanity. We do not yet understand what making heritable genetic alterations will mean for our fundamental relationships — parent to child, physician to patient, state to citizen and society to its members.

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