News from Bioethics.com

Woman with Severe Learning Disability to Get Contraceptive Patch against Mother’s Wishes

3 weeks 1 day

(The Guardian) – A woman with a severe learning disability who gave birth after a suspected rape should be fitted with a contraceptive patch against the wishes of her mother, the high court has ruled. The 21-year-old woman, known in court as V, has an unspecified but severe learning disability. Her mother, referred to in court as W, argued against contraception, saying increased protective measures would be enough.  But a senior judge has ruled that the mother’s own health issues meant she was unable to give her daughter the necessary protection to prevent another assault.

In the Intersex Community, We’re Desperate for Quality Care. Doctors Aren’t Listening.

3 weeks 1 day

(STAT News) – I was a perfectly healthy teen, and that unnecessary surgery actually removed my hormone-producing testes. As a result, I’ve needed hormone replacement therapy ever since. But even though I live in a major city renowned for its hospitals, I still haven’t been able to find a qualified endocrinologist to manage my treatment — let alone a physician who understands what it means to be intersex. That’s because medical care for intersex people is overwhelmingly focused on surgical intervention when we’re children and too young to consent. The needs of intersex adults are an afterthought.

‘Incredible’ Editing of Life’s Building Blocks

3 weeks 1 day

(BBC) – Scientists have demonstrated an “incredibly powerful” ability to manipulate the building blocks of life in two separate studies. One altered the order of atoms in DNA to rewrite the human genetic code and the instructions for life. The other edited RNA, which is a chemical cousin of DNA and unlocks the information in the genetic code. The studies – which could eventually treat diseases – have been described as clever, important and exciting.

A Reuters Journalist Bought Human Body Parts, Then Learned a Donor’s Heart-Wrenching Story

3 weeks 2 days

(Reuters) – The month after Cody died, Restore Life sold part of the young man’s body: his cervical spine. The transaction required just a few email exchanges and $300, plus shipping. Whether Restore Life vetted the buyer is unclear. But if workers there had verified their customer’s identity, they would have learned he was a reporter from Reuters. The news agency was seeking to determine how easy it might be to buy human body parts and whether those parts would be useful for medical research. In addition to the spine, Reuters later purchased two human heads from Restore Life, each priced at $300.

‘What Could Help Me Die?’ Doctors Clash over Euthanasia

3 weeks 2 days

(STAT News) – Thienpont’s approach to managing euthanasia requests has raised concerns even among doctors who support the procedure for psychological suffering. According to copies of letters obtained by The Associated Press, those worries have led to a clash between Thienpont and Dr. Wim Distelmans, chairman of Belgium’s euthanasia review commission, that has not been publicly disclosed. The documents do not include accusations that patients were killed who shouldn’t have been, but they suggest doctors may have failed to meet certain legal requirements in some cases. And they highlight how difficult it can be to judge whose pain should end in death.

Why Opioids Are Such an American Problem

3 weeks 2 days

(BBC) – When it comes to taking opioids, the United States has the dubious honour of leading the world. For every one million Americans, almost 50,000 doses of opioids are taken every day. That’s four times the rate in the UK. There are often good reasons for taking opioids. Cancer patients use them for pain relief, as do patients recovering from surgery (codeine and morphine are opioids, for example). But take too many and you have a problem. And America certainly has a problem.In two years, the town of Kermit in West Virginia received almost nine million opioid pills, according to a congressional committee. Just 400 people live in Kermit.

Declaring Opioids a Health Emergency Could Make Treatment More Widely Available

3 weeks 2 days

(FiveThirtyEight) – As the country reels from record-high rates of opioid abuse and overdoses, medication-assisted treatment — which combines medication and behavioral therapy — has shown particular promise in combating the epidemic. But it also faces major challenges to widespread use, including the costs and limits on doctors who can provide it. President Trump on Thursday declared a nationwide public health emergency to battle the opioid crisis.

‘No One Is Coming:’ Investigation Reveals Hospices Abandon Patients at Death’s Door

3 weeks 2 days

(TIME) – The investigation analyzed 20,000 government inspection records, revealing that missed visits and neglect are common for patients dying at home. Families or caregivers have filed over 3,200 complaints with state officials in the past five years. Those complaints led government inspectors to find problems in 759 hospices, with more than half cited for missing visits or other services they had promised to provide at the end of life.

New Gene-Editing ‘Pencil’ Erases Disease-Causing Errors

3 weeks 3 days

(Scientific American) – There are more than 50,000 known human genetic maladies that have, in most cases, few good treatments and no cure. Now researchers at the Broad Institute of Harvard and MIT have developed a new tool that would theoretically make it possible to correct the genetic errors behind about 15,000 of these illnesses—including sickle-cell disease, cystic fibrosis and several forms of congenital deafness and blindness. Standard gene-editing tools, such as the well-known CRISPR–Cas9 system, function like scissors; they can cut an offending gene from a strand of DNA. This could be useful against diseases such as Huntington’s, which is caused by duplications of genetic material. The new tool, called ABE (adenine base editors), is more like an editing pencil, according to lead researcher David Liu.

Out of the Syrian Crisis, a Data Revolution Takes Shape

3 weeks 3 days

(Nature) – Whenever war, hurricanes or other disasters ravage part of the globe, one of the biggest problems for aid organizations is a lack of reliable data. People die because front-line responders don’t have the information they need to act efficiently. Doctors and epidemiologists plod along with paper surveys and rigid databases in crisis situations, watching with envy as tech companies expertly mine big data for comparatively mundane purposes. Three years ago, one frustrated first-responder decided to do something about it. The result is an innovative piece of software called the Dharma Platform, which almost anyone can use to rapidly collect information and share, analyse and visualize it so that they can act quickly.

The ‘Uber for Birth Control’ Expands in Conservative States, Opening a New Front in War over Contraception

3 weeks 3 days

(STAT News) – It’s a telemedicine app that seems rather innocuous — enter your info, have it reviewed by a physician, and get a prescription. The California-based company behind it has raised millions to support its mission of expanding access to the pill, ring, or morning-after pill with minimal hurdles. But that last option is now starting to attract pushback from anti-abortion activists, who consider the morning-after pill equivalent to abortion — and who say lax telemedicine laws are enabling access to this drug with insufficient oversight.

Anti-Aging Stem Cell Treatment Proves Successful in Early Human Trials

3 weeks 3 days

(New Atlas) – Mesenchymal stem cells (MSCs) are a particular type of adult stem cell generating a great deal of interest in the world of science. MSCs are currently being trailed as treatment for no less than a dozen different types of pathological conditions from cancer to heart disease. This new MSC treatment is targeted at reducing the effects of frailty on senior citizens. This is the first anti-aging stem cell treatment directed specifically at the problem of age-associated frailty to move close to a final FDA approval stage.

When Hope Runs Out, Cancer Patients Are Making Their Own DIY Immunotherapy Treatments

3 weeks 3 days

(Gizmodo) – Do-it-yourself treatments exist in a tricky ethical arena that tests the limits of how much agency we are willing to give patients in making decisions about their life and treatment. Increasingly, it is the view of mainstream medicine that when a person’s life is on the line, they should have the right to engage in high-risk treatments. Last month, the US Senate unanimously approved a bill that would allow terminally ill patients access to drugs that have gone through preliminary testing on humans, but not yet gained FDA approval. Similar right-to-try laws have already been passed in 37 states, some of which allow even patients with serious but not terminal illnesses to try experimental drugs.

After the Storms, Restoring Puerto Rico’s already Weak Electrical Grid Is FDA’s Top Priority

3 weeks 4 days

(STAT News) – The Food and Drug Administration’s biggest concern in Puerto Rico is access to electricity, Commissioner Scott Gottlieb said at a congressional hearing Tuesday morning. “If [drug and device manufacturing plants] don’t return to the grid by the end of this year, we’re concerned we could face multiple potential shortages,” Gottlieb said. He added that the concern could be mitigated if companies shift more of their manufacturing operations off the island. The FDA has not announced any shortages directly related to Hurricane Maria, but Gottlieb said that the agency is keeping close watch on 30 different drugs and 50 types of devices.

Womb with a View: Surgeons Remove Uterus from Mother in Groundbreaking Operation on Spina Bifida Foetus

3 weeks 4 days

(The Telegraph) – It might look like a glowing egg from an alien world, but this red ovoid is actually human womb containing a baby, removed from its mother before birth, in a groundbreaking operation. Doctors in the US have been pioneering an astonishing new treatment for spina bifida in which the baby is operated on before birth.

Breast Cancer Genetics Revealed: 72 New Mutations Discovered in Global Study

3 weeks 4 days

(CNN) – The genetic causes of breast cancer just got clearer.  Researchers from 300 institutions around the world combined forces to discover 72 previously unknown gene mutations that lead to the development of breast cancer. Two studies describing their work published Monday in the journals Nature and Nature Genetics. The teams found that 65 of the newly identified genetic variants are common among women with breast cancer.

Britain Backs GSK’s Gene Therapy for ‘Bubble Boy’ Syndrome

3 weeks 4 days

(Reuters) – GlaxoSmithKline’s gene therapy for the so-called “bubble boy” disease was approved by Britain’s healthcare cost watchdog NICE, despite a price tag of almost 600,000 euros ($700,000). Gene therapy is designed to deliver a one-off cure for the patient and drugmakers are typically asking a hefty price that is comparable to the combined costs of alternative life-long treatment.

A Baby with a Disease Gene or No Baby at All: Genetic Testing of Embryos Creates an Ethical Morass

3 weeks 4 days

(STAT News) – Jessie and Samantha’s story speaks to an emerging ethical morass in the field of reproductive medicine: what to do when patients seeking to get pregnant select embryos with DNA that could lead to a disease or disability. Should clinicians’ desire to help their patients have children override concerns about possibly doing harm to those children? And what about cases in which patients — like Samantha and Jessie — end up with only one viable embryo through in vitro fertilization?

DNA Scan for Infants Raise Questions of Privacy and Discrimination

3 weeks 4 days

(CBS) – Genetic counselors in Boston are offering new parents a controversial peek at their baby’s future health. It’s part of a landmark study that could lead to gene scans for all infants at birth. By law, every newborn in America gets a blood test for about 30 conditions including cystic fibrosis and sickle cell anemia. A trial underway at Brigham and Women’s Hospital uses genomic sequencing to screen for about 1,800 conditions, including some cancers.

WHO Cancels Robert Mugabe Goodwill Ambassador Role

3 weeks 5 days

(BBC) – The World Health Organization has revoked the appointment of Zimbabwe’s Robert Mugabe as a goodwill ambassador following a widespread outcry. “I have listened carefully to all who have expressed their concerns,” WHO head Tedros Adhanom Ghebreyesus said in a statement. He had previously praised Zimbabwe for its commitment to public health. But critics pointed out that Zimbabwe’s healthcare system had collapsed in recent years.

Robert Mugabe Is Appointed a WHO Goodwill Ambassador, Stunning Critics

3 weeks 5 days

(STAT News) – The new head of the World Health Organization has named Zimbabwean President Robert Mugabe a goodwill ambassador for the agency, a move that has startled and dismayed public health experts. The WHO director-general, Tedros Adhanom Ghebreyesus, announced the controversial appointment on Wednesday in a speech at a global conference on noncommunicable diseases in Montevideo, Uruguay. Tedros, as he is known, described himself as “honored” that Mugabe — whose government has repressed protesters and the political opposition, has been accused of rigging elections, and has been implicated in widespread human rights violations — had agreed to serve as a goodwill ambassador on noncommunicable diseases for Africa.

FDA Teams with Medical Companies in Puerto Rico to Tackle Shortages

4 weeks 1 day

(Reuters) – The head of the U.S. Food and Drug Administration said the agency was working with several pharmaceutical and medical device companies in Puerto Rico to prevent shortages of medical products in the United States as it joins a massive effort to help rebuild the island that was ravaged by Hurricane Maria. Drugmakers are working to get facilities fully online after the storm slammed into the Caribbean island on Sept. 20, knocking out electricity and causing widespread damage to homes and infrastructure.

Link between Adolescent Pot Smoking and Psychosis Strengthens

4 weeks 1 day

(Scientific American) – Society’s embrace of cannabis to treat nausea, pain and other conditions proceeds apace with the drive to legalize the plant for recreational use. Pot’s seemingly innocuous side effects have helped clear a path toward making it a legal cash crop, with all of the marketing glitz brought to other consumer products. But that clean bill of health only goes so far. Marijuana’s potentially detrimental impact on the developing brains of adolescents remains a key focus of research—particularly because of the possibility teenage users could go on to face a higher risk of psychosis.

U.S. Must Allow Undocumented 17-Year-Old to Have Abortion, Judge Says

4 weeks 1 day

(New York Times) – A federal judge on Wednesday ordered top United States government officials to allow a pregnant 17-year-old immigrant to get an abortion — the first ruling in a case that could eventually grow to include hundreds of other undocumented minors who seek access to an abortion while in federal custody.

Ethical Concerns Arise for Head of Controversial Stem Cell Clinic

4 weeks 1 day

(Retraction Watch) – Journals are raising ethical concerns about the research of a doctor who offers controversial embryonic stem cell treatments. Two journals have issued expressions of concern for three papers by Geeta Shroff, who was the subject of a 2012 CNN investigative documentary. All cite ethical concerns; one mentions the potential link between the procedure the authors describe and a risk of forming teratomas, a type of tumor. Shroff has objected to all three notices.

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