News from Bioethics.com

New Science Data-Sharing Rules Are Two Scoops of Disappointment

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(STAT News) – In an editorial this week, the International Committee of Medical Journal Editors (ICMJE) — which counts among its members the editors of such hard-hitting publications as the New England Journal of Medicine, the Journal of the American Medical Association, and the BMJ — said that, starting in July 2018, members must require a data-sharing statement in all submitted manuscripts. But the committee stops short of requiring such sharing, saying only that editors “may” take into account authors’ plans for data sharing when they’re deciding whether to publish a paper.

A First: All Respond to Gene Therapy in a Blood Cancer Study

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(ABC News) – Doctors are reporting unprecedented success from a new cell and gene therapy for multiple myeloma, a blood cancer that’s on the rise. Although it’s early and the study is small — 35 people — every patient responded and all but two were in some level of remission within two months. In a second study of nearly two dozen patients, everyone above a certain dose responded. Experts at an American Society of Clinical Oncology conference in Chicago, where the results were announced Monday, say it’s a first for multiple myeloma and rare for any cancer treatment to have such success.

How Asia’s Surrogate Mothers Became a Cross-Border Business

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(South China Morning Post) – In October, there was what Savouen viewed as a breakthrough: the health ministry followed other countries in the region by deciding to ban foreigners from seeking commercial surrogacy within its borders. That decision may have been welcomed by people like Savouen, but it’s had a host of unintended, and unpleasant consequences, not least among them the chaos it has caused for surrogates and intended parents whose embryos were implanted before the decision was made. The ensuing chaos forced Phnom Penh in recent weeks to announce an “exit strategy” for such children, though dozens of intended parents are still reporting problems in taking custody of their newborns.

The ‘Living Dead’: Prisoners Executed for Their Organs then Sold to Foreigners for Transplants

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(News.com.au) – Researchers say China is home to the most rampant illegal organ trade in the world and is the number one destination for ‘transplant tourism’. The practice sees desperate people — from countries where waiting lists are longer than their life expectancy or costs are exorbitant — travel overseas to buy an organ and have lifesaving surgery. But there’s a major catch: Researchers say the donor organs are often sourced illegally from prisoners executed for their religious, political or cultural beliefs, who have not consented to any of it. Many of China’s prisoners have testified to having been subjected to medical testing consistent with organ transplant screening but without explanation while behind bars.

Group: 504 Sought Life-Ending Drugs under New California Law

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(ABC News) – At least 504 terminally ill Californians have requested a prescription for life-ending drugs since a state law allowing doctor-assisted deaths went into effect in June 2016, marking the first publicly released data on how the practice is playing out in the nation’s most populous state. The number released Thursday represents only those who have contacted Compassion & Choices, an advocacy group that provides information on the process. The organization believes the overall figure to be much higher. State officials have not released data yet.

Surrogacy–the Impossible Dream of a Fair Trade Baby

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(Medical Xpress) – One of Førde’s findings is precisely this: When you are privileged, you also have the privilege to define the world according to your own standpoint. With support from the way in which surrogacy has been organised in India, it is perfectly possible to see the exchange as a pure win-win situation. Another of Førde’s findings is, on the other hand, that it is impossible to defend surrogacy in India as an arrangement between equals. It gives highly unequal results for the involved parties. The western parents can bring a baby home with them. The Indian woman who has given birth to their baby, earn a sum of money that isn’t sufficient to get her out of poverty. The women are often left with a sense of loss: they have given someone a huge gift, but aren’t even close to be receiving the equivalent in return.

New Insights into How the Zika Virus Causes Microcephaly

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(Science Daily) – A study published today in Science shows that the Zika virus hijacks a human protein called Musashi-1 (MSI1) to allow it to replicate in, and kill, neural stem cells. Almost all MSI1 protein in the developing embryo is produced in the neural stem cells that will eventually develop into the baby’s brain, which could explain why these cells are so vulnerable to Zika.

Resurrected: A Controversial Trial to Bring the Dead Back to Life Plans a Restart

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(STAT News) – For any given medical problem, it seems, there’s a research team trying to use stem cells to find a solution. In clinical trials to treat everything from diabetes to macular degeneration to ALS, researchers are injecting the cells in efforts to cure patients. But in one study expected to launch later this year, scientists hope to use stem cells in a new, highly controversial way — to reverse death. The idea of the trial, run by Philadelphia-based Bioquark, is to inject stem cells into the spinal cords of people who have been declared clinically brain-dead. The subjects will also receive an injected protein blend, electrical nerve stimulation, and laser therapy directed at the brain.

A 5-Sentence Letter Helped Trigger America’s Deadliest Drug Overdose Crisis Ever

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(Vox) – Now a new study in the NEJM has looked at just how much of a reach the letter had. Researchers Pamela Leung, Erin Macdonald, Irfan Dhalla, and David Juurlink found that the letter was cited more than 600 times since it was published, with a sharp increase after the opioid maker Purdue Pharma introduced OxyContin in the mid-1990s. The researchers concluded, “[W]e found that a five-sentence letter published in the Journal in 1980 was heavily and uncritically cited as evidence that addiction was rare with long-term opioid therapy. We believe that this citation pattern contributed to the North American opioid crisis by helping to shape a narrative that allayed prescribers’ concerns about the risk of addiction associated with long-term opioid therapy.”

The Puzzle of Housing Aging Sex Offenders

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(The Atlantic) – Another blind spot is that almost no one is counting how many sex offenders require end-of-life care. Back in 2006, the U.S. Government Accountability Office counted 700 registered sex offenders living in nursing homes or intermediate care facilities. More recent numbers among the nation’s 15,600 long-term care facilities and their 1.4 million residents are hard to come by.

Crack in CRISPR Facade after Unanticipated In Vivo Mutations Arise

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(GEN) – The CRISPR/Cas9 genome-editing technique set the molecular biology field ablaze when its game-changing potential was realized only a few short years ago. In the time since this wildfire of excitement and hope, it has spread to almost every life science endeavor imaginable and shows little sign of slowing down. However, new data from a team of scientists lead by investigators at Columbia University Medical Center (CUMC) has uncovered that the gene-editing technology can introduce hundreds of unintended mutations into the genome—a concerning find, considering the technology is beginning to move full steam ahead into clinical trials. The findings from the new study were published recently in Nature Methods in an article entitled “Unexpected Mutations after CRISPR-Cas9 Editing In Vivo.”

A Massive New Study Lays Out the Map of Our Genetic Intelligence

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(Quartz) – Decades of work on twin studies suggest that genes account for roughly half of variations in IQ seen across a population. And a meta-analysis published this week in Nature on nearly 80,000 people has identified 40 specific genes that affect intelligence. The one study more than quadrupled the number of genes scientists know of that shape intelligence, bringing the total number to 52. There’s still a long way to go. The currently known genes are thought to account for just 4.8% of variations in IQ, meaning that there are hundreds of genes that play a role in intelligence and are yet to be discovered.

Hackers Publish Private Photos from Cosmetic Surgery Clinic

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(The Guardian) – Hackers have published more than 25,000 private photos, including nude pictures, and other personal data from patients of a Lithuanian cosmetic surgery clinic, police say. The images were made public on Tuesday by a hacking group calling themselves “Tsar Team”, which broke into the servers of the Grozio Chirurgija clinic earlier this year and demanded ransoms from the clinic’s clients in more than 60 countries around the world, including the UK. Police say that following the ransom demand, a portion of the database was released in March, with the rest following on Tuesday.

Trials of Embryonic Stem Cells to Launch in China

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(Nature) – In the next few months, surgeons in the Chinese city of Zhengzhou will carefully drill through the skulls of people with Parkinson’s disease and inject 4 million immature neurons derived from human embryonic stem cells into their brains. Then they will patch the patients up, send them home and wait.  This will mark the start of the first clinical trial in China using human embryonic stem (ES) cells, and the first one worldwide aimed at treating Parkinson’s disease using ES cells from fertilized embryos. In a second trial starting around the same time, a different team in Zhengzhou will use ES cells to target vision loss caused by age-related macular degeneration.

The Drug Rebellion Fighting Big Pharma to Save the NHS Millions

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(New Scientist) – Fleming is one of a growing number of people using buyers’ clubs, which facilitate the unofficial purchase of cheap generic versions of branded drugs, often with tacit help from doctors. Hepatitis C medicines are the newest addition to these grey markets, thanks to the recent development of safe and effective therapies – and the enormous prices they command. But while buyers’ clubs may fill the gap for people like Fleming, is this any way to do medicine in the 21st century? Or is it a sign that we need to fundamentally rethink how we develop and fund new drugs?

One Doctor’s War against Global Organ Trafficking

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(PBS Newshour) – A controversy was brewing. Delmonico, a leading voice on ethical organ transplantation, had planned a February 2017 summit in Rome for representatives of more than 40 countries to discuss the ethics of transplanting organs and to sign a pledge to uphold high standards. But there was a hitch: A key invitee to the forum was Dr. Jiefu Huang, who has led reform of China’s organ donation practices. Critics, including some in the Vatican, wanted at the summit no representatives of China, which for years sold and transplanted organs from executed prisoners. Delmonico, however, saw the Chinese presence as a good thing.

Doctor’s Records in U.S. Doping Investigation Don’t Match Patients’ Copies

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(ProPublica) – The notes document an experiment on Magness in which he was given a large infusion of the supplement L-carnitine to see if it would enhance his running performance. L-carnitine is a legal substance that helps the body convert fat to energy. According to the USADA report, the experiment violated World Anti-Doping Code infusion limits that apply both to athletes and support personnel. Magness said when he saw the copy of the notes in the report, he noticed significant differences from his own copy. The infusion notes are still there, but so are checkmarks indicating that Magness received a medical examination beyond the L-carnitine experiment.

Texas on Track to Become First State to Explicitly Back Stem Cell Therapies

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(STAT News) – Lawmakers in Austin have approved a bill authorizing unapproved stem cell therapies, putting Texas on track to become the first state to explicitly recognize the experimental treatments. The measure now heads to Governor Greg Abbott, who has signaled his support for it. For years, clinics across the country have been offering experimental stem cell therapies for patients with chronic conditions or terminal illnesses, but no state has given them legal validation. Instead, clinics have largely operated under the radar of regulatory authorities, touting treatments for a range of injuries and diseases.

Ebola Vaccine Approved for Use in Ongoing Outbreak

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(Nature) – Regulatory and ethics review boards in the Democratic Republic of the Congo (DRC) have approved the use of an experimental Ebola vaccine to combat an ongoing outbreak of the virus, officials announced on 29 May. If they decide to deploy the vaccine, called rVSV ZEBOV, workers will offer it to those at highest risk of contracting the disease. Uncertainties over the outbreak’s magnitude mean Congolese authorities and the World Health Organization (WHO) must determine whether the small number of confirmed cases justifies the cost and logistical complexity that comes with deploying the vaccine, says Marie-Paule Kieny, the assistant director-general of Health Systems and Innovation at the WHO in Geneva, Switzerland.

Zika in Ahmedabad: ‘This Is Not a Public Health Crisis,’ Claims Gujarat Health Commissioner

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(Scroll.in) – Over the last 72 hours, the Gujarat health department has received flak from both its citizens and the public health community for hiding the presence of the Zika virus in Ahmedabad. Blood samples of three residents – a 64-year-old man and two new mothers aged 34 and 22 – from the Bapunagar and Gopalnagar localities of the Ahmedabad district were found to be positive for the Zika virus. In the first week of January, the Indian Council of Medical Research and the Government of India intimated senior officials of Gujarat’s health department about the possibility of Zika virus transmission in the area. But, the health department did not make the information public.

‘This Is Not the End’: Using Immunotherapy and a Genetic Glitch to Give Cancer Patients Hope

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(The Washington Post) – What followed is an illuminating tale of how one woman’s intersection with experimental research helped open a new frontier in cancer treatment — with approval of a drug that, for the first time, capitalizes on a genetic feature in a tumor rather than on the disease’s location in the body. The breakthrough, made official last week by the Food and Drug Administration, immediately could benefit some patients with certain kinds of advanced cancer that aren’t responding to chemotherapy. Each should be tested for that genetic signature, scientists stress.

CRISPR Gene Editing Can Cause Hundred of Unintended Mutations

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(PhysOrg) – As CRISPR-Cas9 starts to move into clinical trials, a new study published in Nature Methods has found that the gene-editing technology can introduce hundreds of unintended mutations into the genome. “We feel it’s critical that the scientific community consider the potential hazards of all off-target mutations caused by CRISPR, including single nucleotide mutations and mutations in non-coding regions of the genome,” says co-author Stephen Tsang, MD, PhD, the Laszlo T. Bito Associate Professor of Ophthalmology and associate professor of pathology and cell biology at Columbia University Medical Center and in Columbia’s Institute of Genomic Medicine and the Institute of Human Nutrition.

Yemen Cholera Death Toll Rises, But Number of Infections Drop: WHO

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(Reuters) – The number of people who have died in a cholera epidemic affecting Yemen has risen to at least 471, according to World Health Organization (WHO) figures released on Monday. But the latest WHO bulletin covering the period from April 27, said that there was a “significant decrease” in the daily average number of cases recorded in the week up to May 27 compared to the previous seven-day period. The epidemic began in October and grew until December. It then dwindled but was never brought fully under control, and a new surge in cases began in April.

‘Every Year, I Give Birth’: Why War Is Driving a Contraception Crisis in Sudan

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(The Guardian) – It has also meant a severe lack of maternal healthcare. There is no local midwife, and Sebila lives five hours’ drive from a hospital, in a region where cars are a rare luxury. Women told me of waiting hours for transport while in obstructed labour, or being held propped up, bleeding and falling in and out of consciousness, between two men on the back of a motorcycle to reach a hospital. Multiple and closely-spaced births can carry serious health risks for both mother and infant, and can be life-threatening without proper treatment.

It’s Not Pain But ‘Existential Distress’ That Leads People to Assisted Suicide, Study Suggests

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(Washington Post) – Allowing assisted dying to come into the open has helped us gain insights about one of the most fundamental questions of our existence: where humans draw the line between choosing life and choosing death. But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising: The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.

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