(Wired) – In fact, drug regulators are usually playing catch up to drug users. But next month at the Rio Olympics, officials will roll out a test for a doping method that athletes might not even be using yet—genetic manipulation of the body’s own cellular machinery, or gene doping. “We feel there’s a great risk this novel technology will be used,” says Carl Johan Sundberg, an exercise physiologist at the Karolinska Institute in Sweden who reviewed the new test for the World Anti-Doping Agency. “So we are being proactive for the first time.”
Journal of Medical Ethics (vol. 42, no. 6, 2016) is available online by subscription only.
- “Prenatal Screening and Prenatal Diagnosis: Contemporary Practices in Light of the Past” by Ana S Iltis
- “The Ethics of Sexual Reorientation: What Should Clinicians and Researchers do?” by Sean Aas and Candice Delmas
- “Ageing, Justice and Resource Allocation” by Tom Walker
- “Killing or Letting Die? Proposal of a (Somewhat) New Answer to a Perennial Question” by Reinhard Merkel
- “Can Facilitated Aid in Dying be Permitted by ‘Double Effect’? Some Reflections from a Recent New Zealand Case” by Colin Gavaghan and Mike King
- “The Right to Public Health” by James Wilson
- “Why I Wrote My Advance Decision to Refuse Life-Prolonging Treatment: And Why the Law on Sanctity of Life Remains Problematic” by Raanan Gillon
- “Conceptualising Well-Being for Autistic Persons” by Ingrid Robeyns
- “Means, Ends and the Ethics of Fear-Based Public Health Campaigns” by Ronald Bayer and Amy L Fairchild
- “‘Autism and the Good Life’: A New Approach to the Study of Well-Being” by Raffaele Rodogno, Katrine Krause-Jensen, and Richard E Ashcroft
- “BMA End-of-Life Care and Physician-Assisted Dying Project” by Sophie Brannan, Ruth Campbell, Martin Davies, Veronica English, Rebecca Mussell, and Julian C Sheather
Medicine, Health Care, and Philosophy (vol. 19, no. 2, 2016) is available online by subscription only.
- “Measuring ‘Virtue’ in Medicine” by Ben Kotzee and Agnieszka Ignatowicz
- “Questioning Engelhardt’s Assumptions in Bioethics and Secular Humanism” by Shahram Ahmadi Nasab Emran
- “You Hoped We Would Sleep Walk Into Accepting the Collection of Our Data”: Controversies Surrounding the UK care.data Scheme and Their Wider Relevance for Biomedical Research” by Sigrid Sterckx, Vojin Rakic, Julian Cockbain, and Pascal Borry
- “How do Researchers Decide Early Clinical Trials?” by Hannah Grankvist and Jonathan Kimmelman
- “The Utility of Standardized Advance Directives: The General Practitioners’ Perspective” by Ina Carola Otte, Bernice Elger, Corinna Jung, and Klaus Walter Bally
- “The Ethics of Killing Human/Great-Ape Chimeras for Their Organs: A Reply to Shaw et al.” by César Palacios-González
- “Child Organ Trafficking: Global Reality and Inadequate International Response” by Alireza Bagheri
- “Medicalization in Psychiatry: The Medical Model, Descriptive Diagnosis, and Lost Knowledge” by Mark J. Sedler
- “Continuous Deep Sedation and Homicide: An Unsolved Problem in Law and Professional Morality” by Govert den Hartogh
- “The Issue of Being Touched” by Betty-Ann Solvoll and Anders Lindseth
- “Drinking in the Last Chance Saloon: Luck Egalitarianism, Alcohol Consumption, and the Organ Transplant Waiting List” by Andreas Albertsen
Journal of Medical Ethics (vol. 42, no. 7, 2016) is available online by subscription only.
- “Medical Involvement in Torture Today?” by Kenneth Boyd
- “Are Healthcare Professionals Working in Australia’s Immigration Detention Centres Condoning Torture?” by David Isaacs
- “The Clinician and Detention” by Howard Goldenberg
- “Premortem Interventions in Dying Children to Optimise Organ Donation: An Ethical Analysis” by Joe Brierley andDavid Shaw
- “In What Circumstances Will a Neonatologist Decide a Patient is Not a Resuscitation Candidate?” by Peter Daniel Murray, Denise Esserman, and Mark Randolph Mercurio
- “Right to Refuse Treatment in Turkey: A Diagnosis and a Slightly Less Than Modest Proposal for Reform” by Nurbay Irmak
- “Towards a Bioethics of Innovation” by Wendy Lipworth and Renata Axler
- “The Ethics and Politics of Mindfulness-Based Interventions” by Andreas T Schmidt
- “Good Eggs? Evaluating Consent Forms for Egg Donation” by Alana Rose Cattapan
- “Evidence of Broad-Based Family Support for the Use of Archival Childhood Tumour Samples in Future Research by Alexandra Sexton-Oates, Andrew Dodgshun, Duncan MacGregor, Louise E Ludlow, Michael Sullivan, and Richard Saffery
- “Students’ Responses to Scenarios Depicting Ethical Dilemmas: A Study of Pharmacy and Medical Students in New Zealand” by Marcus A Henning, Phillipa Malpas, Sanya Ram, Vijay Rajput, Vladimir Krsti?, Matt Boyd, and Susan J Hawken
Journal of Empirical Research on Human Research Ethics (vol. 11, no. 2, 2016) is available online by subscription only.
- “Ethics Review for a Multi-Site Project Involving Tribal Nations in the Northern Plains” by Jyoti Angal, Julie M. Petersen, Deborah Tobacco, Amy J. Elliott, and Prenatal Alcohol in SIDS and Stillbirth Network
- “Community Partnered Research Ethics Training in Practice: A Collaborative Approach to Certification” by Michael A. Yonas, Maria Catrina Jaime, Jean Barone, Shannon Valenti, Patricia Documét, Christopher M. Ryan, and Elizabeth Miller
- “The Influence of Age, Health Literacy, and Affluence on Adolescents’ Capacity to Consent to Research” by Lance R. Nelson, Nathan W. Stupiansky, and Mary A. Ott
- “Research Ethics Committees and Participatory Action Research With Young People: The Politics of Voice” by Zeynep M. Yanar, Mehria Fazli, Jahanara Rahman, and Rys Farthing
- “Ethics Oversight Mechanisms for Surgical Innovation: A Systematic and Comparative Review of Arguments” by Lila Karpowicz, Emily Bell, and Eric Racine
- “Phronesis: Beyond the Research Ethics Committee—A Crucial Decision-Making Skill for Health Researchers During Community Research” by Minrie Greeff and Stuart Rennie
- “The Impact of Ethics Review on a Research-Led University Curriculum: Results of a Qualitative Study in Australia” by L. L. Wynn
Palliative Medicine (vol. 30, no. 7, 2016) is available online by subscription only.
- “Developing Research, Policy and Practice in Palliative Care for People With Intellectual Disabilities Will Benefit Everyone” by Irene Tuffrey-Wijne, Leopold Curfs, and Luc Deliens
- “A Survey of Views and Practice Patterns of Dialysis Medical Directors Toward End-of-Life Decision Making for Patients With End-Stage Renal Disease” by Enrica Fung, Nate Slesnick, Manjula Kurella Tamura, and Brigitte Schiller
- “Preferences Regarding Disclosure of Prognosis and End-of-Life Care: A Survey of Cancer Patients With Advanced Disease in a Lower-Middle-Income Country” by Waleed Zafar, Haroon Hafeez, Arif Jamshed, Mazhar Ali Shah, Ainul Quader, and M Aasim Yusuf
- “‘I Think You Just Learnt as You Went Along’ – Community Clergy’s Experiences of and Attitudes Towards Caring for Dying People: A Pilot Study” by Andrew Goodhead, Peter Speck, and Lucy Selman
- “Reducing Inequalities in Care for Patients With Non-Malignant Diseases: Insights From a Realist Evaluation of an Integrated Palliative Care Pathway” by Sonia Michelle Dalkin, Monique Lhussier, Pete Philipson, Diana Jones, and William Cunningham
(The Atlantic) – A Texas judge dismissed Tuesday the last charge against two anti-abortion activists who made secret video recordings of their conversations with Planned Parenthood officials who described how the organization provided fetal tissue to medical researchers. David Daleiden, 27, and Sandra Merritt, 63, had used fake identification while meeting with Planned Parenthood officials and had offered to buy the fetal tissue from the organization that, among other things, provides family-planning services.
(New York Times) – But naloxone, also known by the brand name Narcan, has also had unintended consequences. Critics say that it gives drug users a safety net, allowing them to take more risks as they seek higher highs. Indeed, many users overdose more than once, some multiple times, and each time, naloxone brings them back. Advocates argue that the drug gives people a chance to get into treatment and turn their lives around and that there is no evidence naloxone increases the use of opiates. And, they say, few addicts knowingly risk needing to be revived, since naloxone ruins their high and can make them violently ill.
(Scientific American) – As hackers probe cyberspace they are finding weaknesses among the vast patchwork of doctors, hospitals and insurers that make up our health care system—many of them unprepared to counter a sophisticated hacker. Heath data thieves typically seek to extort money, obtain medications, get free health care or steal identities for credit cards and tax refunds. A glut of stolen credit cards and resulting lower prices for them on the black market have made medical data especially attractive, says Angel Grant, director of fraud and risk intelligence at RSA Security: “They are looking for new ways to make money, and they see the health care industry as a soft target because they lack the security maturity of other industries.”
(Nature) – Government researchers in Brazil are set to explore the country’s peculiar distribution of Zika-linked microcephaly — babies born with abnormally small heads. Zika virus has spread throughout Brazil, but extremely high rates of microcephaly have been reported only in the country’s northeast. Although evidence suggests that Zika can cause microcephaly, the clustering pattern hints that other environmental, socio-economic or biological factors could be at play.
(Nature) – A cancer diagnosis is a shock, but adults with the disease can take some comfort in the numerous treatments available to them — both through clinical trials and as drugs that are already on the market. Children cannot. Because they make up only 1% of US patients with cancer, children are a low priority for pharmaceutical companies that want to launch an effective drug quickly. The hassle of a paediatric clinical trial may not seem worth it until after the drug has proved to be safe and effective in adults. This process can take decades, leaving children with therapies that are sometimes almost obsolete.
(Nature) – A new antibiotic was right under our noses — or rather, in them. Produced by a bacterium living in the human nose, the molecule kills the potentially deadly methicillin-resistant Staphylococcus aureus (MRSA) in mice and rats. Staphylococcus aureus resides in the noses of 1 in 3 people without causing a problem. MRSA — an S. aureus strain resistant to many antibiotics — is found in 2 in 100. In a small percentage of cases, the bacterium escapes to the bloodstream, causing infection. MRSA kills 11,000 people annually in the United States alone.
(UPI) – Although doctors prefer bone marrow transplants for leukemia patients, a new study suggests cord blood transplants offer patients a better outcome. Researchers at the University of Colorado report the rate of rejection, infection and hospitalization are lower among patients receiving cord blood than those with a matched, unrelated bone marrow donor. Their recent study’s results, they say, may shift the conventional wisdom when deciding on transplant options for their patients.
(Eurekalert) – Published today in Nature Genetics, the study reveals three new risk genes for ALS and one of these – C21orf2 – increases an individual’s risk of developing the dis-ease by 65 per cent. These results could aid the development of personalised treatments for people with ALS by using gene therapy – an approach which involves replacing faulty genes or adding new ones. One in every 400 people will be diagnosed with amyotrophic lateral sclerosis (ALS) at some point in their lives, yet its causes are largely unknown and effective treatments are therefore lacking.
‘It’s Better the Disabled Disappear’: 19 People Stabbed to Death at Japanese Care Facility by ‘Euthanasia Advocate’
(South China Morning Post) – In Japan’s worst mass killing in decades, 19 disabled people were stabbed to death in their sleep and 25 people were wounded by a knife-wielding man at a facility for the disabled in Japan early on Tuesday. Police in Sagamihara, Kanagawa Prefecture, about 40km southwest of Tokyo, have arrested Satoshi Uematsu, a 26-year-old former employee at the facility and reported euthanasia advocate, who drove to a police station to turn himself in soon after the attack.
(Scientific American) – The Summer Olympics are poised to begin in Rio de Janeiro. Time to celebrate the extraordinary talent, fortitude and grace of athletes representing the world’s diverse nations, from Iceland to Nigeria. And time to wonder how many competitors are boosting their performances with banned substances. The World Anti-Doping Agency, WADA, which advises the Olympics and other sports organizations on illicit performance-enhancement, has accused Russia of carrying out a state-run doping program for its athletes. Russia could of course be just the tip of the iceberg
Public Understand of Science (vol. 25, no. 5, 2016) is available online by subscription only.
- “Public Opinions About Human Enhancement can Enhance the Expert-Only Debate: A Review Study” by Anne M. Dijkstra and Mirjam Schuijff
- ‘Public Engagement with Scientific Evidence in Health: A Qualitative Study Among Primary-Care Patients in an Urban Population” by Marilyn M. Schapira, Diana Imbert, Eric Oh, Elena Byhoff, and Judy A. Shea
European Journal of Human Genetics (vol. 24, no. 7, 2016) is available online by subscription only.
- “Preferences for Prenatal Tests fir Down Syndrome: An International Comparison of the Views of Pregnant Women and Health Professionals” by Melissa Hill et al.
Journal of Genetic Counseling (vol. 25, no. 4, 2016 is available online by subscription only.
- Developing a Model of Advanced Training to Promote Career Advancement for Certified Genetic Counselors: An Investigation of Expanded Skills, Advanced Training Paths, and Professional Opportunities” by Bonnie J. Baty, Angela Trepanier, Robin L. Bennett, Claire Davis, Lori Erby, Catriona Hippman, Barbara Lerner, Anne Matthews, Melanie F. Myers, Carol B. Robbins, and Claire N. Singletary
- “Genetic Counseling Milestones: A Framework for Student Competency Evaluation” by Carrie Guy
- “Genetic Counselors in Startup Companies: Redefining the Genetic Counselor Role” by Marina M. Rabideau, Kenny Wong, Erynn S. Gordon & Lauren Ryan
- “Professional Issues of International Genetic Counseling Students Educated in the United States” by Gozde Akgumus, Divya Shah, Lydia Higgs & Kathleen Valverde
- “Stories as Gift: Patient Narratives and the Development of Empathy” by Anne C. Spencer
- “Genomic Testing: a Genetic Counselor’s Personal Reflection on Three Years of Consenting and Testing” by Julia Wynn
- “Emerging Genetic Counselor Roles within the Biotechnology and Pharmaceutical Industries: As Industry Interest Grows in Rare Genetic Disorders, How are Genetic Counselors Joining the Discussion?” by Tessa Field, Stephanie Jo Brewster, Meghan Towne, and MaryAnn W. Campion
- “The Relationship Between Burnout and Occupational Stress in Genetic Counselors” by Brittney Johnstone, Amy Kaiser, Marie C. Injeyan, Karen Sappleton, David Chitayat, Derek Stephens, and Cheryl Shuman
- “Portrait of the Master Genetic Counselor Clinician: A Qualitative Investigation of Expertise in Genetic Counseling” by Cacy Miranda, Patricia McCarthy Veach, Meredith A. Martyr, and Bonnie S. LeRoy
- “Further Defining the Role of the Laboratory Genetic Counselor” by Lindsey Waltman, Cassandra Runke, Jessica Balcom, Jacquelyn D. Riley, Margaret Lilley, Susan Christian, Lindsay Zetzsche, and McKinsey L. Goodenberger
- “From Novice to Seasoned Practitioner: A Qualitative Investigation of Genetic Counselor Professional Development” by Kimberly Wehner Zahm, Patricia McCarthy Veach, Meredith A. Martyr, and Bonnie S. LeRoy
JAMA (vol. 316, no. 3, 2016) is available online by subscription only.
- “Medical Informatics and the “Three Long, One Short” Problem of Large Urban Hospitals in China” by Jingyao Dai, Xiaofei Wang, and Francisco J. Ayala
- “Implications of Proposed Medicare Reforms to Counteract High Cancer Drug Prices” by Sham Mailankody and Vinay Prasad
- “Preventing Mitochondrial DNA Diseases: One Step Forward, Two Steps Back” by I. Glenn Cohen and Eli Y. Adashi