News from Bioethics.com

A Spate of Deadly Disasters for the Elderly

7 hours 14 min

(CNN) – Recent wildfires in California and hurricanes in Florida, Texas and Puerto Rico have put a spotlight on vulnerable seniors — including a number of deaths that authorities have said were preventable. “The bulk of them are in their 70s and 80s, so there is that commonality,” Sonoma County Sheriff Rob Giordano said of the first wildfire victims to be identified during a press conference Thursday. The majority were found in their homes, reduced to “ashes and bones,” Giordano said. Several were identified using medical implants, such as a hip replacement, with unique serial numbers.

‘Kidney for Sale’: Iran Has a Legal Market for the Organs, but the System Doesn’t Always Work

1 day 8 hours

(Los Angeles Times) – In fact, Iran offers people a legal way to sell their kidneys — and is the only country in the world to do so. A government foundation registers buyers and sellers, matches them up and sets a fixed price of $4,600 per organ. Since 1993, doctors in Iran have performed more than 30,000 kidney transplants this way. But the system hasn’t always worked as it’s been billed. Sellers have learned that they can cut side deals to earn up to thousands more from well-off Iranians eager to bypass the roughly yearlong wait for a transplant under the government system, or foreigners barred from the national program. In recent years, doctors have been caught attempting to perform transplants for Saudis who obtained forged Iranian IDs.

Fertility: Why We Need a Registry for the Long-Term Risks of Egg Donors

1 day 9 hours

(Newsweek) – The risks women face from becoming egg donors are unknown. And we can’t know the risks because long-term studies with a large population of women who have donated eggs have not been done. Now, one woman is calling for a national registry to track these unrecognized risks.

Genes for Skin Color Rebut Dated Notions of Race, Researchers Say

1 day 9 hours

(New York Times) – “If you ask somebody on the street, ‘What are the main differences between races?,’ they’re going to say skin color,” said Sarah A. Tishkoff, a geneticist at the University of Pennsylvania. On Thursday, Dr. Tishkoff and her colleagues showed this to be a profound error. In the journal Science, the researchers published the first large-scale study of the genetics of skin color in Africans. The researchers pinpointed eight genetic variants in four narrow regions of the human genome that strongly influence pigmentation — some making skin darker, and others making it lighter.

An Anarchist Takes on the Drug Industry–by Teaching Patients to Make Their Own Meds

4 days 9 hours

(STAT News) – The de facto leader behind the leaderless collective Four Thieves Vinegar, Laufer is now on to his next project: He’s developing a desktop lab and a recipe book meant to equip patients to cook up a range of medicines, including a homemade version of the expensive hepatitis C drug Sovaldi, on their kitchen counters. Health professionals have strenuously warned against DIY pharmaceuticals, but Laufer sees his work as a moral crusade against the patent laws and market forces that let drug companies price vital remedies out of reach for many patients.

Dementia Patient at Center of Spoon-Feeding Controversy Dies

4 days 9 hours

(Kaiser Health News) -An Oregon woman with Alzheimer’s disease, whose husband claimed she was kept alive with spoon-feeding against her written wishes, has died. Nora Harris, 64, died early Wednesday at the Fern Gardens senior care center in Medford, Ore. Her husband, Bill Harris, said the death marks the end of an eight-year battle with the progressive, debilitating disease, which included an unsuccessful court fight to withdraw all food and liquid.

Sweden Won’t Prosecute Italian Stem Cell Scientist

4 days 9 hours

(San Francisco Chronicle) – Swedish prosecutors have abandoned an investigation against a disgraced Italian stem cell scientist suspected of involuntary manslaughter in connection with three patients who died after windpipe transplants. Prosecutor Jennie Nordin said it can’t be proven that Dr. Paolo Macchiarini would be guilty of either causing another’s death or causing bodily harm, so he is no longer a suspect.

FDA Advisers Back Gene Therapy for Rare form of Blindness

4 days 10 hours

(Nature) – Advisers to the US Food and Drug Administration (FDA) have paved the way for the agency’s first approval of a gene therapy to treat a disease caused by a genetic mutation. On 12 October, a panel of external experts unanimously voted that the benefits of the therapy, which treats a form of hereditary blindness, outweigh its risks. The FDA is not required to follow the guidance of its advisers, but it often does. A final decision on the treatment, called voretigene neparvovec (Luxturna), is expected by 12 January.

To Accelerate New Cancer Treatments, NIH Will Team Up with Pharma on Immunotherapy Research

5 days 9 hours

(STAT News) – The National Institutes of Health on Thursday announced a $215 million public-private partnership with 11 pharmaceutical companies in what the agency bills as a significant next step in its cancer moonshot. The Partnership for Accelerating Cancer Therapies, or PACT, is a five-year agreement to push ahead with research that seeks to “identify, develop and validate robust biomarkers — standardized biological markers of disease and treatment response — to advance new immunotherapy treatments that harness the immune system to attack cancer,” the agency said.

Puerto Rico Investigates Post-Hurricane Disease Outbreak

6 days 8 hours

(STAT News) – Four deaths in Hurricane Maria’s aftermath are being investigated as possible cases of a disease spread by animals’ urine, Puerto Rico’s governor said Wednesday amid concerns about islanders’ exposure to contaminated water. A total of 10 people have come down with suspected cases of leptospirosis, Gov. Ricardo Rossello said at a news conference. On a U.S. territory where a third of customers remain without running water three weeks after the hurricane, some became ill after turning to local streams to relieve their thirst.

The Rise and Fall and Rise again of 23andMe

6 days 8 hours

(Nature) – 23andme has always been the most visible face of direct-to-consumer genetic testing, and it is more formidable now than ever before. In September, the company announced that it had raised US$250 million: more than the total amount of capital raised by the company since its inception. Investors estimate that it is worth more than $1 billion, making it a ‘unicorn’ in Silicon Valley parlance — a rare and valuable thing to behold. But for scientists, 23andme’s real worth is in its data. With more than 2 million customers, the company hosts by far the largest collection of gene-linked health data anywhere. It has racked up 80 publications, signed more than 20 partnerships with pharmaceutical firms and started a therapeutics division of its own.

Gene Expression Study Raises Thorny Ethical Issues

6 days 8 hours

(Nature) – Ronald’s myriad tissues, and those of almost 1,000 other anonymous deceased donors, are now the basis of a first-of-its-kind database. Supported by the US National Institutes of Health, the US$150-million Genotype-Tissue Expression (GTEx) project is amassing data about gene sequences and activity, and other information, across 44 types of tissue, from blood vessels to 10 different brain regions.  “It’s creating a ‘Google Maps’ of the body,” says Kristin Ardlie, a geneticist at the Broad Institute of MIT and Harvard in Cambridge, Massachusetts, who is part of the project’s data-analysis team. It routinely releases new data, which are freely available to qualified researchers.

Should You Be Allowed to Sell Your Kidney?

6 days 9 hours

(Gizmodo) – But there are rare, new alternatives of doctors incentivizing altruistic donations. One such promising idea is UCLA’s new “take-a-kidney-leave-a-kidney” voucher program. It solves the problem of what doctors are calling “chronological incompatibility”—friends and family who would be willing to provide kidneys to relatives who might not need one until after the donor is dead or available to donate. Now they can pay their kidney forward and get a voucher for their recipient, who will be able to move up the transplant list. So far, the program has spurred at least 25 donations. Yet, 25 donations pales when you consider that 13 Americans died today, and every day, waiting for a kidney, according to the National Kidney Foundation.

Doctors Get Their Own Second Opinions

1 week 7 hours

(The Atlantic) – Human Dx might help doctors confirm their suspected diagnoses or think of things to rule out. At Mary’s Center, one man came in complaining of headaches and nausea, and the Human Dx physicians suggested a blood test called an ESR. Another time, Nundy used it to confirm a suspected case of rheumatoid arthritis before putting a low-income patient on a heavy-duty course of medications. Experienced doctors use Human Dx for their most difficult cases, and newer providers use it to hone their skills. Johns Hopkins Hospital and other teaching hospitals are now using it to train medical residents.

Fertility MOT Tests ‘A Waste of Money’

1 week 7 hours

(BBC) – Fertility tests marketed at women worried they have left it too late to have a baby, can be a “waste of money”.  Ovarian reserve tests, which can cost £100 or more, measure hormones in blood to give an idea of how many eggs a woman has. Latest research in the Journal of the American Medical Association found the tests did not predict a woman’s chance of conceiving, however. Women must be told this, experts say. The tests were originally developed by IVF clinics to predict how a woman having fertility treatment might respond to the drugs used to stimulate the ovaries to produce eggs.  But some companies have been marketing them to women as a fertility MOT.

Seeing Hope: FDA Panel Considers Gene Therapy for Blindness

1 week 8 hours

(ABC News) – On Thursday, U.S. Food and Drug Administration advisers will consider whether to recommend approval of a gene therapy that improved vision for these three youths and some others with hereditary blindness. It would be the first gene therapy in the U.S. for an inherited disease, and the first in which a corrective gene is given directly to a patient. Only one gene therapy is sold in the U.S. now, a cancer treatment approved in August that engineers patients’ blood cells in the lab.

More than 2,000 Canadians Have Died with Medical Assistance Since Legalization

1 week 1 day

(CBC News) – More than 2,000 Canadians have ended their lives legally with the help of a doctor, and most of them were suffering from terminal cancer. According to the latest report from Health Canada, there were 1,982 medically assisted deaths in the one-year period after it became legal in June 2016. There have been another 167 in Quebec since it was legalized in that province in December 2015, the report said. The total has been rising faster, with 803 assisted deaths in the first six months after it became legal nationally and 1,179 in the following six months from January to June 2017.

Navajo Nation Reconsiders Ban on Genetic Research

1 week 1 day

(Nature) – When the Navajo Nation opens its first oncology centre next year in Tuba City, Arizona, clinicians there may be able to offer a service that has been banned on tribal lands for 15 years: analyzing the DNA of Navajo tribe members to guide treatments and study the genetic roots of disease. That’s because the Navajo, the second-largest Native American group in the United States, are considering whether to lift their longstanding moratorium on genetic research. The tribal government banned DNA studies in 2002 to prevent the misuse of its members’ genetic material.

Silicon Isn’t Just for Computers. It Can Make a Pretty Good Kidney, Too

1 week 4 days

(Wired) – Now, after more than 20 years of work, one team of doctors and researchers is close to offering patients an implantable artificial kidney, a bionic device that uses the same technology that makes the chips that power your laptop and smartphone. Stacks of carefully designed silicon nanopore filters combine with live kidney cells grown in a bioreactor. The bundle is enclosed in a body-friendly box and connected to a patient’s circulatory system and bladder—no external tubing required.

Operating-Room Videos a Bad Idea, Medical Paper Says

1 week 4 days

(Fox News) – Posting videos from the operating room may be a creative way for plastic surgeons to market their skills, but critics say some surgeons seem to place entertainment value ahead of medical ethics. A new paper published in the journal Plastic and Reconstructive Surgery takes aim at surgical staffs who appear to be more interested in singing and dancing in the ER than in treating patients.

Charlatans Threaten Stem Cell Research with Unproven Cures, Experts Say

1 week 4 days

(The Guardian) – The credibility of stem cell research is at risk because of charlatans and dodgy clinics peddling unproven cures for diseases, according to a group of eminent scientists in the field. Stem cell research, or regenerative medicine, has great potential and has already delivered some breakthroughs, but its future is threatened by poor science, unrealistic hopes, unclear funding models and unscrupulous private clinics, they say in the Lancet medical journal. A special Lancet commission made up of leading experts has reviewed the progress to date in a field that was once thought to offer answers potentially to all forms of disease and disability.

Experimental Drug That Mutes Defective Genes Raises New Hopes

1 week 5 days

(Scientific American) – The RNAi delivery systems remain highly complex—and the most effective technologies are still protected by patents that make it difficult for startups to get into the field. Safety concerns persist with other RNAi drugs in development: Last year, for instance, Alnylam had to scrap revusiran, one of its most advanced drugs. Rather than alleviating it, the drug exacerbated pain in a rare nerve disease called transthyretin amyloidosis. And several patients died in the clinical trial, though it’s still not clear exactly why. Alnylam’s stock plummeted by half on that news.

Gene Therapy Helps Boys with ‘Lorenzo’s Oil’ Disease

1 week 5 days

(ABC News) – The fledgling field of gene therapy has scored another win: An experimental treatment seemed to help boys with the inherited nerve disease featured in the movie “Lorenzo’s Oil.” Fifteen of the 17 boys treated in a study had no major disability two years later — remarkable for a disease that often causes swift decline and kills within a decade.

The Letters of an ‘Imbecile,’ the Sham, and Shame, of Eugenics

1 week 5 days

(Undark) – We now know that the Holmes opinion was both cruel and false — and is contradicted by a historic marker in Charlottesville, Virginia that has nothing to do with the Civil War, or the soldier-on-horseback monuments that have generated so much controversy recently. This much more obscure marker recalls Buck’s case and declares that she had no “hereditary defects.” Instead, she was the victim of a sham trial that began her trip to the Supreme Court, and provided justification for 60,000 poor or disabled people in 32 states who were sterilized under laws similar to Virginia’s Sterilization Act of 1924, which aimed to prevent people diagnosed with “insanity … idiocy, imbecility, feeble-mindedness or epilepsy” from reproducing.

Parents Lobby States to Expand Newborn Screening Test for Rare Brain Disorder

1 week 5 days

(NPR) – ALD is a genetic brain disorder depicted in the 1992 movie Lorenzo’s Oil, which portrayed a couple whose son became debilitated by the disease. The most serious form of the illness typically strikes boys between the ages of 4 and 10. Most are diagnosed too late for treatment to be successful, and they often die before their 10th birthday. The more De Nies learned about ALD, the more she realized how fortunate the family was to have discovered Gregory’s condition so early. Her son’s blood was tested when he was about 10 months old.

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