News from Bioethics.com

Doctors Get Their Own Second Opinions

1 week 3 days

(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 3 days

(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 3 days

(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 4 days

(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 4 days

(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

2 weeks 23 hours

(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

2 weeks 1 day

(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

2 weeks 1 day

(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

2 weeks 1 day

(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

2 weeks 1 day

(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

2 weeks 1 day

(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

2 weeks 1 day

(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.

Clinical Research: Inequality in Medicine

2 weeks 2 days

(Nature) – All drugs pose some risk to everyone who takes them. But women face more danger than men and have a lower likelihood that a therapy will work. Between 2004 and 2013, for instance, women in the United States suffered more than 2 million drug-related adverse events, compared with just 1.3 million for men, according to the US Food and Drug Administration (FDA). A special report from the US General Accounting Office found that, of the ten drugs removed from the US market between 1997 and 2000, eight were withdrawn because of side effects that occurred only, or mainly, in women.

The United States Is Failing Its Mothers

2 weeks 2 days

(Nature) – Yet between 1990 and 2015, the maternal mortality rate in the United States climbed by 56%, rising from 16.9 deaths per 100,000 births to 26.4, according to a recent study that was published in The Lancet (see ‘Maternal mortality snapshot’). What caused this rise? Many people have theories but no one knows for sure. Over the past two decades, there have been no consistent documentation and analysis. Without quality data, there is no way to understand the causes of this trend.

Replacing Faulty Heart Devices Costs Medicare $1.5 Billion in 10 Years

2 weeks 2 days

(New York Times) – Medicare paid at least $1.5 billion over a decade to replace seven types of defective heart devices, a government watchdog says. The devices apparently failed for thousands of patients. A report released on Monday by the inspector general’s office for Health and Human Services said officials needed to do a better job tracking these costly product failures to protect patients from harm. More detailed reporting could lead to earlier recognition of serious problems with medical devices and faster recalls of all types of “poorly performing” ones, the inspector general’s office said.

Ethics of Internet Research Trigger Scrutiny

2 weeks 3 days

(Nature) – Common themes among these efforts include rethinking what counts as ‘public’ data, the ethical use of social media and the need to consider a study’s potential harm to wider society, as well as to individuals. Many countries have long-standing ethical checks for research that intervenes in human lives. But those principles, set up for medical and psychological studies, apply to research on human subjects, the definition of which often excludes Internet research, says Metcalf.

Chinese Scientists Fix Genetic Disorder in Cloned Human Embryos

2 weeks 3 days

(Nature) – A team in China has taken a new approach to fixing disease genes in human embryos. The researchers created cloned embryos with a genetic mutation for a potentially fatal blood disorder, and then precisely corrected the DNA to show how the condition might be prevented at the earliest stages of development. The report, published on 23 September in Protein & Cell is the latest in a series of experiments to edit genes in human embryos. And it employs an impressive series of innovations, scientists say. Rather than replacing entire sections of genes, the team, led by Junjiu Huang at Sun Yat-sen University in Guangzhou, China, tweaked individual DNA letters, or bases, using a precision gene-editing technology developed in the United States.

Body Clock Scientists Win Nobel Prize

2 weeks 3 days

(BBC) – Three scientists who unravelled how our bodies tell time have won the 2017 Nobel Prize for physiology or medicine. The body clock – or circadian rhythm – is the reason we want to sleep at night, but it also drives huge changes in behaviour and body function.The US scientists Jeffrey Hall, Michael Rosbash and Michael Young will share the prize. The Nobel prize committee said their findings had “vast implications for our health and wellbeing”.

Artificial Organs Used in Operations without Approval for Humans

2 weeks 3 days

(New Scientist) – Experimental implants manufactured at University College London were sent abroad and used on patients despite not having approval for human use, an inquiry has found. The implants included an artificial windpipe, a synthetic tear duct and an arterial graft. The inquiry, led by Stephen Wigmore of the University of Edinburgh at the request of UCL, was triggered by the university’s relationship with Paolo Macchiarini, a surgeon at the centre of a scandal in which six of eight patients who received synthetic windpipes died.

Nurturing Controversy: The Real Science Behind the Artificial Womb

2 weeks 4 days

(Undark Magazine) – While not completely discounting the thought experiments that accompanied the CHOP announcement (and which have followed analogous efforts elsewhere), a variety of scientists and medical practitioners suggest that the challenges and limits of technology are too often being overlooked. For anyone agonizing over (or hoping for) an imminent “Brave New World,” the scientific realities are likely to prove eye opening.

Most Caregivers Favour Assisted Dying for Alzheimer’s Patients: Survey

2 weeks 4 days

(Montreal Gazette) – In the first study of its kind in Canada, an overwhelming majority of Quebec caregivers say they’re in favour of extending medical assistance in dying to those afflicted with Alzheimer’s disease or dementia. The survey by Université de Sherbrooke epidemiologist Gina Bravo found that 91 per cent of respondents support the idea of assisted dying for individuals suffering from dementia who are at the terminal state of their illness, showing signs of distress and who have an advance written directive. What’s more, 72 per cent said they were for assisted dying even for Alzheimer’s patients who did not sign a written directive before their illness.

‘Chemical Surgery’ Used to Mend Harmful Mutations in Human Embryos

2 weeks 4 days

(The Guardian) – Researchers in China have used a procedure described as “chemical surgery” to mend harmful mutations in human embryos for the first time. The scientists found that it was possible to repair a faulty gene that gives rise to a serious blood disorder called beta thalassemia which can be caused by one misspelling in the DNA code. None of the embryos treated in the experiments were used to produce babies, and doing so would be illegal in the UK and many other countries. But the work proves that the method, known in genetics as “base editing”, could be an effective way to prevent inherited diseases.

Two Patients Show the Promise of a Historic Treatment, with an Equally Historic Price Tag

2 weeks 4 days

(CNBC) – The outcomes for Kaitlyn and Justin are part of the mysteries of medicine: why a cutting-edge therapy works for years for one person, and just months for another. Notably, this situation has been worked into Kymriah’s pricing. If the treatment is controlling patients’ cancer after a month, its price tag is $475,000. “The CAR-T therapy is administered to all patients who need it,” Novartis’ Bradner explained. “If the medicine is working at a fixed period of time, then Novartis is compensated. And if it doesn’t, then we feel good at having provided this chance for that patient.”

Students Look to Vending Machines for Better Access to Morning-After Pill

2 weeks 4 days

(New York Times) – It has been four years since the federal government lifted the age limit for the morning-after pill, but college students across the country say gaining access to it remains fraught with confusion and difficulty. Now some colleges think they have found a solution: vending machines stocked with the morning-after pill. Stanford University unveiled one this month, following in the footsteps of several other colleges, including the University of California, Santa Barbara and the University of California, Davis, which made headlines after it installed a “wellness” machine this year that sells the generic version of Plan B, as well as pregnancy tests, feminine hygiene products, Advil, Claritin and other items.

Puerto Rico’s Slow-Motion Medical Disaster

3 weeks 23 hours

(Wired) – Hurricane Maria left a ruined island and 16 Puerto Rico residents dead. But public health experts worry that figure could climb higher in the coming weeks, as many on the island fail to get medicines or treatment they need for chronic diseases. Roads are blocked, supplies are stuck at the ports, and only 11 of Puerto Rico’s 69 hospitals are open. Doctors at one children’s hospital were forced to discharge 40 patients this week when their generator ran out of diesel fuel.

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