(PBS) – Scientists describe the period that immediately follows as a black box. What little we do know is based on donated and preserved human embryos made available through institutions like the Carnegie Collection, started in the early 1900s, and the cultured embryos of animals–mice, chicks, the rare large mammal, and a few non-human primates. But humans are not frogs or mice or monkeys, and so to understand human development, we have to study humans. It’s no easy task. The newly implanted embryo is like a grain of sand embedded in a pillow locked in a box—impossible to observe. Unless that is, you can get an embryo to develop not in a uterus, but in a dish.
(ProPublica) – If you want to know why the nation’s health care costs are among the highest in the world, a good place to start is with what we throw away. Across the country, nursing homes routinely toss large quantities of perfectly good prescription medication: tablets for diabetes, syringes of blood thinners, pricey pills for psychosis and seizures. At a time when anger over soaring drug costs has perhaps never been more intense, redistributing discarded drugs seems like a no-brainer. Yet it’s estimated that American taxpayers, through Medicare, spend hundreds of millions of dollars each year on drugs for nursing home patients — much of which literally go down the tubes.
(The Guardian) – Research suggests that there is a small but significant number of US women who attempt to induce their own abortions without any medical supervision. Several studies have shown that many of these women, particularly those living along the US-Mexico border, are using misoprostol, a miscarriage-causing drug that can be legally purchased over the counter in many Central American pharmacies. In the US, it is illegal to administer the drug outside of certain medical clinics.
(New Scientist) – Advances in neuroscience and neurotechnology offer the potential for extremely precise observation, collection and even alteration of human brain activity. Emerging cognitive tools, such as brain-computer interfaces and transcranial magnetic stimulation, could bring revolutionary advances in medicine and our understanding of behaviour. However, according to Swiss-based bioethicists Marcello Ienca and Roberto Andorno, these techniques also raise fundamental questions about human rights that need additional legal protection. Their concerns, published this week, are valid and appropriate, but we must be aware of the consequences of introducing such rights.
(STAT News) – Some human stem cells growing in labs that researchers have used in experiments to treat serious diseases contain serious cancer-causing mutations, scientists reported on Wednesday. The discovery raised alarms that patients could be treated for one disease, such as macular degeneration, only to develop another, cancer. Harvard scientists obtained samples of most of the human embryonic stem cell lines registered with the National Institutes of Health for use in both basic research and in developing therapies for patients with diseases including diabetes, Parkinson’s, and macular degeneration. They found that five of the 140 lines had cells with a cancer-causing mutation.
(Verily) – The Handmaid’s Tale premieres on Hulu today. It’s a book-based TV series, starring Elizabeth Moss, depicting a dystopian government where women are disenfranchised and used primarily just for their ability to reproduce. But what many fans of the story (and the new show) might not realize is that this reductionist and coercive treatment of women is not just a fictional plot line. Outside of Margaret Atwood’s story, the practice of gestational surrogacy is the harsh reality for many women across the globe.
(Reuters) – Trade in illegal organs is a booming business in Lebanon as desperate Syrian refugees resort to selling body parts to support themselves and their families, according to an investigation by the BBC. A trafficker who brokers deals from a coffee shop in Beirut, identified as Abu Jaafar, said while he knew his “booming” business was illegal, he saw it as helping people in need. He spoke to the BBC journalist Alex Forsyth from his base in a dilapidated building covered by a plastic tarpaulin in a southern Beirut suburb.
(The Economist) – Many deaths are preceded by a surge of treatment, often pointless. A survey of doctors in Japan found that 90% expected that patients with tubes inserted into their windpipes would never recover. Yet a fifth of patients who die in the country’s hospitals have been intubated. An eighth of Americans with terminal cancer receive chemotherapy in their final fortnight, despite it offering no benefit at such a late stage. Nearly a third of elderly Americans undergo surgery during their final year; 8% do so in their last week.
(The Economist) – This newspaper has called for the legalisation of doctor-assisted dying, so that mentally fit, terminally ill patients can be helped to end their lives if that is their wish. But the right to die is just one part of better care at the end of life. The evidence suggests that most people want this option, but that few would, in the end, choose to exercise it. To give people the death they say they want, medicine should take some simple steps. More palliative care is needed. This neglected branch of medicine deals with the relief of pain and other symptoms, such as breathlessness, as well as counselling for the terminally ill.
Genetics in Medicine (vol. 19, no. 4, 2017) is available online by subscription only.
- “Successful Outcomes of Older Adolescents and Adults with Profound Biotinidase Deficiency Identified by Newborn Screening” by Barry Wolf
- “A Secondary Benefit: The Reproductive Impact of Carrier Results from Newborn Screening for Cystic Fibrosis” by Yvonne Bombard et al.
- “Estimation of the Number of People with Down Syndrome in the United States” by Gert de Graaf, Frank Buckley, and Brian G. Skotko
- “Streamlined Genetic Education Is Effective in Preparing Women Newly Diagnosed with Breast Cancer for Decision Making About Treatment-Focused Genetic Testing: A Randomized Controlled Noninferiority Trial” by Veronica F. Quinn et al.
NanoEthics (vol. 11, no. 1, 2017) is available online by subscription only.
- “Changing Me Softly: Making Sense of Soft Regulation and Compliance in the Italian Nanotechnology Sector” by Simone Arnaldi
- “Visioneering Socio-Technical Innovations — a Missing Piece of the Puzzle” by Martin Sand and Christoph Schneider
- “The Logic of Digital Utopianism” by Sascha Dickel and Jan-Felix Schrape
- “One Site—Multiple Visions: Visioneering Between Contrasting Actors’ Perspectives” by Franziska Engels, Anna Verena Münch and Dagmar Simon
- “How Smart Grid Meets In Vitro Meat: on Visions as Socio-Epistemic Practices” by Arianna Ferrari and Andreas Lösch
- “Into Blue Skies—a Transdisciplinary Foresight and Co-creation Method for Adding Robustness to Visioneering” by Niklas Gudowsky and Mahshid Sotoudeh
Theoretical Medicine and Bioethics (vol. 38, no. 2, 2017) is available online by subscription only.
- “Hearing Sub-Saharan African Voices in Bioethics” by Kevin Gary Behrens
- “Giving Voice to African Thought in Medical Research Ethics” by Godfrey B. Tangwa
- “Ancillary Care Obligations in Light of an African Bioethic: From Entrustment to Communion” by Thaddeus Metz
- “Partiality and Distributive Justice in African Bioethics” by Christopher Simon Wareham
- “Chronicles of Communication and Power: Informed Consent to Sterilisation in the Namibian Supreme Court’s LM Judgment of 2015″ by Nyasha Chingore-Munazvo, Katherine Furman, Annabel Raw, and Mariette Slabbert
- “Dealing with the Other Between the Ethical and the Moral: Albinism on the African Continent” by Elvis Imafidon
JAMA (vol. 317, no. 10, 2017) is available online by subscription only.
- “Acknowledging and Overcoming Nonreproducibility in Basic and Preclinical Research” by John P. A. Ioannidis
- “Unproven Technologies in Maternal-Fetal Medicine and the High Cost of US Health Care” by Steven L. Bloom and Kenneth J. Leveno
BMC Medical Ethics has new articles available online.
- “A Critique of the Regulation of Data Science in Healthcare Research in the European Union” by John M. M. Rumbold and Barbara K. Pierscionek
- “Fair Is Fair: We Must Re-Allocate Livers for Transplant” by Brendan Parent and Arthur L. Caplan
- “Factors Affecting Willingness to Share Electronic Health Data Among California Consumers” by Katherine K. Kim, Pamela Sankar, Machelle D. Wilson, and Sarah C. Haynes
- “Smart Homes, Private Homes? An Empirical Study of Technology Researchers’ Perceptions of Ethical Issues in Developing Smart-Home Health Technologies” by Giles Birchley et al.
(Reuters) – A cheap and widely available drug could save the lives of one in three of the 100,000 new mothers who bleed to death after childbirth every year, mostly in poorer countries, according to the first study of its use in postpartum haemorrhage. In a trial of 20,000 women, researchers found that the drug, called tranexamic acid or TXA, cut the number of deaths due to post-partum bleeding by 31 percent if given within three hours. The treatment costs about $2.50 in most countries, they said.
(Science Daily) – Shortening consent documents makes no significant difference to how well potential research participants understand a clinical study, according to a study published April 26, 2017, in the open-access journal PLOS ONE by Christine Grady from the NIH Clinical Center, US, and colleagues. Informed consent is a central tenet of ethical clinical research, but over time the documents used to obtain informed consent from participants have grown longer, more complex, and harder to read. Grady and colleagues developed a “concise” alternative to consent documents used in the multinational START trial, which was shorter by almost 70 percent at 1,821 words.
(Sydney Morning Herald) – Parents that already have children of one sex might be keen to guarantee the sex of a new addition to achieve “gender balancing” – we all know a couple that kept trying for a son, and ended up with five girls (or vice versa). But behind the desire to “gender balance” there is a lingering misconception that parenting girls and boys is an inherently different experience. This misconception has many consequences, as bioethicist Dr Tamara Kayali Browne, a lecturer in health ethics and professionalism in Deakin University’s School of Medicine has discovered. Dr Browne has conducted extensive research in the field of sex and gender. She tells me that allowing parents to select their child’s sex perpetuates harmful gender stereotypes and places false constraints on parent-child relationships.
(Genetic Engineering & Biotechnology News) – Researchers at the Wellcome Trust Sanger Institute and their colleagues at the University of British Columbia have developed a novel method for studying how the bacterium Chlamydia trachomatis interacts with the human immune system. They used a combination of gene-editing and stem cell technologies to make the model that helped lead to the discovery of two genes from our immune system, interferon regulatory factor 5 (IRF5) and interleukin-10 receptor subunit alpha (IL-10RA), as key players in fighting a Chlamydia infection.
(Kaiser Health News) – For years, experts have predicted that demand for services from a rapidly aging population would outstrip the capacity of the “direct care” workforce: personal care aides, home health aides and nursing assistants. The U.S. Bureau of Labor Statistics estimates an additional 1.1 million workers of this kind will be needed by 2024 — a 26 percent increase over 2014. Yet, the population of potential workers who tend to fill these jobs, overwhelmingly women ages 25 to 64, will increase at a much slower rate.
(Quartz) – People in Britain are more scared of the artificial intelligence embedded in household devices and self-driving cars than in systems used for predictive policing or diagnosing diseases. That’s according to a survey commissioned by the Royal Society, which is billed as the first in-depth look at how the public perceives the risks and benefits associated with machine learning, a key AI technique. Participants in the survey were most worried by the notion that a robot, acting on conclusions derived by machine learning, would cause them physical harm.