(ProPublica) – Yet because of flaws in the way the U.S. identifies and investigates maternal deaths — a process perennially short on funding and scientific attention — what data exists on this particular set of vital statistics is incomplete and untrustworthy. Indeed, for the last decade, the U.S. hasn’t had an official annual count of pregnancy-related fatalities, or an official maternal mortality rate — a damning reflection of health officials’ lack of confidence in the available numbers.
(Scientific American) – Medical historians have recently published accounts that show neurologists were indeed complicit with the Nazis—and became victims if they were classified as “non-Aryan. Heiner Fangerau, who teaches the history and ethics of medicine at University Hospital Düsseldorf—along with colleagues Michael Martin at the Heinrich Heine University of Düsseldorf and Axel Karenberg from the University of Cologne—undertook extensive research on neurologists during the Third Reich for the German Society of Neurology. Fangerau discussed new findings with Corinna Hartmann and Andreas Jahn of Gehirn&Geist, the psychology and neuroscience specialty publication of Spektrum der Wissenschaft, and the German sister publication of Scientific American.
Hastings Center Report (vol. 47, no. 4, 2017) is available online by subscription only.
- “The Precision Medicine Nation” by Maya Sabatello and Paul S. Appelbaum
- “Decision-Making for an Incapacitated Pregnant Patient” by Hilary Mabel, Susannah L. Rose, and Eric Kodish
- “How Long a Life Is Enough Life?” by Daniel Callahan and Willard Gaylin
Genetics in Medicine (vol. 19, no. 5, 2017) is available online by subscription only.
- “Laboratory and Clinical Genomic Data Sharing is Crucial to Improving Genetic Health Care: A Position Statement of the American College of Medical Genetics and Genomics” by ACMG Board of Directors
- “Genome Editing in Clinical Genetics: Points to Consider—A Statement of the American College of Medical Genetics and Genomics” by ACMG Board of Directors
- “The Precision Medicine Initiative’s All of Us Research Program: An Agenda for Research on its Ethical, Legal, and Social Issues” by Pamela L. Sankar and Lisa S. Parker
- “The Value of Genetic Testing: Beyond Clinical Utility” by Barbara Lerner et al.
Developing World Bioethics (vol. 17, no. 2, 2016) is available online by subscription only.
- “The Saudi Law of Ethics of Research on Living Creatures and its Implementing Regulations” by Ghiath Alahmad
- “Benefit Sharing in a Global Context: Working Towards Solutions for Implementation” by Daniel J. Hurst
- “Research Ethics Education in Post-Graduate Medical Curricula in I.R. Iran” by Nazila Nikravanfard, Faezeh Khorasanizadeh and Kazem Zendehdel
- “Informed Consent in Health Research: Challenges and Barriers in Low-and Middle-Income Countries with Specific Reference to Nepal” by Pramod R. Regmi
- “Evaluating the Usefulness of Compulsory Licensing in Developing Countries: A Comparative Study of Thai and Brazilian Experiences Regarding Access to Aids Treatments” by Samira Guennif
- “The Enemy as a Patient: What can be Learned from the Emotional Experience of Physicians and Why does it Matter Ethically?” by Gil Rubinstein and Miriam Ethel Bentwich
- “Reexamining the Prohibition of Gestational Surrogacy in Sunni Islam” by Ruaim A. Muaygil
- “The Vulnerability of Study Participants in the Context of Transnational Biomedical Research: From Conceptual Considerations to Practical Implications” by Helen Grete Orth and Silke Schicktanz
- “Punishment of Minor Female Genital Ritual Procedures: Is the Perfect the Enemy of the Good?” by Allan J. Jacobs and Kavita Shah Arora
Clinical Trials (vol. 14, no. 4, 2016) is available online by subscription only.
- “Inadequacy of Ethical Conduct and Reporting of Stepped Wedge Cluster Randomized Trials: Results from a Systematic Review” by Monica Taljaard et al.
- “Recommendations for Data Monitoring Committees from the Clinical Trials Transformation Initiative” by Karim A Calis et al.
South African Journal of Bioethics and Law (vol. 10, no. 1, 2017) is available online by subscription only.
- “Liver Transplantation for Non-Resectable Colorectal Liver Metastases at a Single Centre in South Africa: A Report of the Ethics and Regulatory Approval process” by Harriet Rosanne Etheredge, Jean Botha, and Peter Cleaton-Jones
- “The Intellectual Challenge of Doing Bioethics in South Africa” by Anthony Egan
- “Incentives for HIV Testing at the Workplace in the Automotive Industry in the Nelson Mandela Bay Municipality: Ethical Considerations” by Martin Weihs, Anna Meyer-Weitz, and Friederike Baasner-Weihs
- “Routine Referrals: A Possible Solution for Transplantation Shortages” by Magda Slabbert and Bonnie Venter
- “A Global Bioethical Perspective on Organ Trafficking: Discrimination, Stigmatisation and the Vulnerable” by Riaan Rheeder
- “Dare We Rethink Informed Consent?” by Malcolm de Roubaix
- “A Constitutional Critique on the Regulations Relating to Artificial Fertilisation of Persons” by Donrich Willem Jordaan
- “Strange (and Incompatible) Bedfellows: The Relationship between the National Health Act and the Regulations Relating to Artificial Fertilisation of Persons, and Its Impact on Individuals Engaged in Assisted Reproduction” by Carmel van Niekerk
(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
(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.
(Medscape) – It’s a common confusion and misconception. The short answer is that all hospice is palliative care, but not all palliative care is hospice. That is the elevator speech version. The more nuanced version is that the Medicare Hospice Benefit, which was written into law about 25 years ago, was designed to reduce the number of people who would use it. They put strict eligibility criteria around access to hospice.
(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.
(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.
(New Scientist) – A stem cell treatment could finally bring relief to millions of people with chronic lower back pain. If it works, the injection could become a crucial tool for curbing the opioid epidemic currently killing thousands in the US. Overdoses from prescription opioids have quadrupled since 1999, and opioids accounted for 33,000 deaths in 2015 alone. Many of those deaths occur as a result of people becoming addicted to opioids after being prescribed drugs such as oxycodone, hydrocodone or methadone to relieve lower back pain.
(The Conversation) – In India, where I’ve studied surrogacy since 2008, the government is rethinking regulations. Gay couples were banned from using commercial surrogacy in 2012. In March 2017, the Indian government extended the commercial ban to everyone. Now, only so-called “altruistic surrogacy” is allowed – when a consenting female family member bears a child for a childless heterosexual Indian couple without pay. But what impact are bans on commercial surrogacy having for women who work in the reproductive industry?
(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?
(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.
Ethics, Medicine, and Public Health (vol. 3, no. 2, 2017) is available online by subscription only.
- “Just Caring: Do We Need Philosophical Foundations?” by L.M. Fleck
- “The Epistemic Responsibilities in Medicine of Beneficence and Respect for Patient Autonomy” by A.P. Schwab
- “Personalised Medicine: Bringing Narrative Tools to Carpem” by M. de Jesus Cabral, C. Hervé, M.-F. Mamzer, P. Leroy, and F. Scotté
- “A Pragmatic Approach to Multicultural/International Bioethics” by D. R. Cooley
- “Are We Persons or Animals? Exposing an Anthropocentric Bias and Suggesting a Hybrid View” by E. Furberg
Journal of the Royal Society of Medicine (vol. 110, no. 7, 2017) is available online by subscription only.
- “A Future of Technology and Other Humans” by Kamran Abbasi
- “Is Integrated Information Management a Core Clinical Skill Required for the Doctor–Patient Encounter?” by Robert K McKinley and Simon P Gay
- “Gene Editing and the Health of Future Generations” by Christopher Gyngell
- “Why Gene Editing Isn’t the Answer” by Kiruna Stamell
The New England Journal of Medicine (vol. 377, no. 3, 2017) is available online by subscription only.
- “Controlling the Cost of Medicaid” by K.J. McConnell and M.E. Chernew
- “Managing Uncertainty — Harnessing the Power of Scenario Planning” by M.L. Schwarze and L.J. Taylor
- “Certain about Dying with Uncertainty” by J.M. Drazen and M.A. Yialamas
- “Implementation of Medical Homes in Federally Qualified Health Centers” by J.W. Timbie and Others
Public Understand of Science (vol. 26, no. 6, 2016) is available online by subscription only.
- “Decomposing the Effects of Time on the Social Acceptability of Biotechnology Using Age-Period-Cohort-Country Models” by Damien Rousselière and Samira Rousselière
- “Identifying Public Expectations of Genetic Biobanks” by Christine Critchley, Dianne Nicol, and Rebekah McWhirter