(NPR) – The head of the World Health Organization, Margaret Chan, came out swinging at the opening ceremony of the 69th World Health Assembly in Geneva on Monday. The meeting of health officials from nearly 200 countries is usually a low-key, bureaucratic affair. Chan, however, opened the assembly by basically saying that the world is facing unprecedented global health challenges right now and is ill-equipped to deal with future threats.
(Medical Xpress) – The lack of participation in clinical research may be the Achilles’ heel of today’s cancer community. According to a new survey of more than 1,500 consumers and nearly 600 physicians conducted on behalf of Memorial Sloan Kettering Cancer Center (MSK), only 35 percent of Americans indicated that they were “likely” to enroll in a clinical trial. Other studies have shown that only 4 percent of cancer patients enroll in clinical trials nationally each year. Additionally, the new data shows that only 40 percent of Americans have a positive overall impression of clinical trials.
(Dutch News) – Right-to-die organisations have made a fresh call for a ‘last will pill’ to be given to people who no longer wish to live but are turned down for euthanasia. The Dutch Association for a Voluntary End to Life (NVVE) and centrist-liberal party D66 both say the medicine should be made available to elderly people who want to end their lives. D66 MP Pia Dijkstra told Nieuwsuur she planned to bring a private bill to parliament later this year allowing people over 80 to end their lives voluntarily.
(Eurekalert) – The CRISPR-Cas9 system has come to be known as the quintessential tool that allows researchers to edit the DNA sequences of many organisms and cell types. However, scientists are also increasingly recognizing that it can be used to activate the expression of genes. To that end, they have built a number of synthetic gene activating Cas9 proteins to study gene functions or to compensate for insufficient gene expression in potential therapeutic approaches.
(Asian Scientist) – Researchers in China have successfully developed human haploid embryonic stem cells (ESCs). This new type of ESC holds a single copy of the human genome instead of the normal two; yet, they are capable of cell division. Their work was published in Cell Research. Mammalian haploid ESCs can be derived from androgenetic or parthenogenetic embryos of different species, including mice, rats and monkeys. However, whether haploid ESCs can be generated from humans was previously unknown.
European Journal of Human Genetics (vol. 24, no. 6, 2016) is available online by subscription only.
- “Responsible Implementation of Expanded Carrier Screening” by Lidewij Henneman, et al.
- “Developing an Intervention to Facilitate Family Communication about Inherited Genetic Conditions, and Training Genetic Counsellors in Its Delivery” by The Socio-Psychological Research in Genomics (SPRinG) Collaboration
Bioethics (vol. 30, no. 5, 2016) is available online by subscription only.
- “The Viable Violinist” by Michael Hawking
- “Medical Researchers’ Ancillary Care Obligations: The Relationship-Based Approach” by Nate W. Olson
- “Integrative Bioethics: A Conceptually Inconsistent Project” by Viktor Ivankovic and Lovro Savic
- “Conscientious Objection in Healthcare Provision: A New Dimsension” by Peter West-Oram and Alena Buyx
- “Emergency Preservation and Resuscitation Trial: A Philosophical Justification for Non-Voluntary Enrollment” by Daniel Tigard
The New England Journal of Medicine (vol. 374, no. 19, 2016) is available online by subscription only.
- “From Patient to Patient—Sharing the Data from Clinical Trials” by C.J. Haug
- “Data Sharing and Inductive Learning—Toward Healthy Birth, Growth, and Development” by N.L. Jumbe, J.C. Murray, and S. Kem
- “A Global, Neutral Platform for Sharing Trial Data” by B.E. Bierer, et al.
- “Avoiding Data Dumpsters—Toward Equitable and Useful Data Sharing” by L. Merson, O. Gaye, and P.J. Guerin
- “The Zika Challenge” by C.J. Haug, M.P. Kieny, and B. Murgue
- “Health as a Family Affair” by E. Wittenberg and L.A. Prosser
- “Drug Regulation and Pricing—Can Regulators Influence Affordability?” by H.-G. Eichler, et al.
(STAT News) – Once again, the US Food and Drug Administration is delaying the debut of a controversial rule for updating generic drug labeling. The rule would allow generic drug makers to independently update safety warnings, something that only brand-name drug makers can currently do before receiving FDA permission. The agency never set a specific introduction date, but the rule was widely expected to be introduced this spring. But on Wednesday, a notice indicated the publication date was extended until April 2017. In fact, this marks the third time since the FDA proposed its rule in 2013 that the rule has been delayed amid opposition from the pharmaceutical industry and some lawmakers.
(Wired) – When a rogue researcher last week released 70,000 OkCupid profiles, complete with usernames and sexual preferences, people were pissed. When Facebook researchers manipulated how stories appear in News Feeds for a mood contagion study in 20141, people were really pissed. OkCupid filed a copyright claim to take down the dataset; the journal that published Facebook’s study issued an “expression of concern.” Outrage has a way of shaping ethical boundaries. We learn from mistakes.
(Nature) – Genetic-testing firm Myriad Genetics is facing a legal challenge from people who say the company refused to give them access to their own genomic data, in violation of a US government rule on medical records. Although Myriad has now agreed to release the data to those individuals, the patients are pressing ahead with their complaint to the US government. The skirmish is the latest in a long-running war between Myriad and data-sharing advocates, and it could ultimately force the company to provide genetic information that patients could then share with scientists.
(Vox) – Numerous countries, in the developed and developing world, are working to increase women’s access to better contraceptives. And Ethiopia’s experience could prove instructive in showing what works in reducing obstacles to birth control. Health workers there know the important role access to local health care providers plays in increasing knowledge around family planning while simultaneously removing barriers.
Real-Time Imaging of Embryo Development Could Pave the Way for More Effective Human Reproduction Therapies
(Medical Xpress) – Researchers at A*STAR’s Institute of Molecular and Cell Biology (IMCB) have developed advanced microscopy technologies to monitor embryo development in real time, revealing how mammalian cells differentiate during the earliest stages of embryonic life. These findings, coupled with the novel imaging technique, hold great potential in shaping how assisted reproduction procedures such as In-Vitro Fertilisation (IVF) and Preimplantation Genetic Diagnosis (PGD) are performed, and making these procedures more effective.
‘Huge’ Demand for IVF Treatment in Ontario — Where It’s Fully Funded — Has Wait List Stretching to 2018
(National Post) – Ontario’s decision to become the lone province to fully fund in-vitro fertilization has proven wildly popular, with clinics taking just weeks to sign up this year’s limit of 5,000 patients — and setting up an almost instant logjam. The policy took effect late last December, but fertility specialists say they’re booking would-be parents into as late as 2018. Clinic caseloads have more than doubled in some instances, as the clientele grows increasingly diverse for a service that normally costs patients up to $10,000 a shot.
(Medical Daily) – A year ago, Mohammad Meshkin of California won a lawsuit that kept his daughter on life support and gave her the life-saving operation she so desperately needed. According to Meshkin, his daughter had been purposely misdiagnosed as brain dead as a way to justify giving her inadequate medical attention. Meshkin insists that this practice is widespread. However, scientifically speaking, are the lines between brain dead and comatose really all that clear?
(Scientific American) – In December 2012 a homeless man named Lukis Anderson was charged with the murder of Raveesh Kumra, a Silicon Valley multimillionaire, based on DNA evidence. The charge carried a possible death sentence. But Anderson was not guilty. He had a rock-solid alibi: drunk and nearly comatose, Anderson had been hospitalized—and under constant medical supervision—the night of the murder in November. Later his legal team learned his DNA made its way to the crime scene by way of the paramedics who had arrived at Kumra’s residence. They had treated Anderson earlier on the same day—inadvertently “planting” the evidence at the crime scene more than three hours later. The case, presented in February at the annual American Academy of Forensic Sciences meeting in Las Vegas, provides one of the few definitive examples of a DNA transfer implicating an innocent person and illustrates a growing opinion that the criminal justice system’s reliance on DNA evidence, often treated as infallible, actually carries significant risks.
(New York Times) – The killing in Port St. Lucie and Mr. Hager’s explanation were detailed in an arrest affidavit and by local news media. Mr. Hager was arrested and charged with first-degree premeditated murder. But the case appeared to also highlight the difficulties faced by older people who are retired or on fixed incomes and struggle to pay for their medicine when they are ill or in pain. At the sheriff’s office, Mr. Hager told deputies that his wife had a “lot of illnesses and other ailments which required numerous medications,” which he “could no longer afford,” the affidavit said.
(The Atlantic) – Segregation is baked into the way people and institutions discuss health care at its most basic levels. Racial differences in almost every health outcome—from infant mortality to life expectancy––are obvious and pronounced, especially between white people and black people. Perhaps because of the sheer size of the evidence of health disparities, all sides of health-policy debates acknowledge their existence, a consensus that has yet to be achieved in debates about education or criminal justice. Yet segregation in health care is rarely discussed in those terms, and its importance in shaping the larger narrative of race in America is often ignored.
(Reuters) – A late-stage trial will begin later this year in South Africa to test the effectiveness of an HIV vaccine that has shown promise in earlier trials, according to the National Institutes of Health. Results from an ongoing preliminary trial in South Africa and a previous late-stage trial in Thailand suggest the new vaccine may provide lasting protection against the human immunodeficiency virus (HIV), which causes AIDS.
(Washington Post) – The Centers for Disease Control and Prevention said Friday that it is monitoring 279 pregnant women with likely Zika virus infections across U.S. states and territories. The largest number of cases by far are in Puerto Rico, where officials are keeping tabs on 122 pregnant women. But they also are tracking 157 other pregnant women across the country.