Decentralized biobanking “de-bi” applies blockchain technology and web3 values to embed the procedural principles of transparency, accountability, and inclusion into the biomedical research ecosyst...

Disparities in maternal morbidity and mortality for Latinx populations are a paradigmatic example of the now widely acknowledged structural racism in U.S. health care that predisposed minorities to...

The revelation that menstruation tracking apps share sensitive data with third parties, like Facebook, provoked a sense of violation among users. This case highlights the need to address ethics and governance of health data created outside of traditional healthcare contexts. Commodifying health data breaches trust and entails health and moral risks. Through the metaphor of The Wizard of Oz, we argue that these apps approximate healthcare without the professional competency, fiduciary duties, legal protections and liabilities such care requires and thus (...) represent an innovation in the annals of snake-oil salesmanship and the systematic devaluing of women’s bodies, lives, and work. (shrink)

The assumption in current U.S. mainstream medicine is that birthing requires hospitalization. In fact, while the American College of Obstetricians and Gynecologists supports the right of every birthing person to make a medically informed decision about their delivery, they do not recommend home birth owing to data indicating greater neonatal morbidity and mortality. In this article, we examine the evidence surrounding home birth in the United States and its current limitations, as well as the ethical considerations around birth setting.

Volume 19, Issue 9, September 2019, Page 50-52.

To help eliminate perinatal HIV transmission, the US Department of Health and Human Services recommends against breastfeeding for women living with HIV, regardless of viral load or combined antiretroviral therapy status. However, cART radically improves HIV prognosis and virtually eliminates perinatal transmission, and breastfeeding's health benefits are well-established. In this setting, pregnancy is increasing among American women with HIV, and a harm reduction approach to those who breastfeed despite extensive counseling is suggested. We assess the evidence and ethical justification for (...) current policy, with attention to pertinent racial and health disparities. We first review perinatal transmission and breastfeeding data relevant to US infants. We compare hypothetical risk of HIV transmission from breastmilk to increased mortality from sudden infant death syndrome, necrotizing enterocolitis and sepsis from avoiding breastfeeding, finding that benefits may outweigh risks if mothers maintain undetectable viral load on cART. We then review maternal health considerations. We conclude that avoidance of breastfeeding by women living with HIV may not maximize health outcomes and discuss our recommendation for revising national guidelines in light of autonomy, harm reduction and health inequities. (shrink)

Prenatal ultrasound use is skyrocketing despite limited evidence of improved outcomes. One factor driving this trend is the widely recognized psychological appeal of real-time fetal imaging. Meanwhile, considering imperfect safety evidence, U.S. professional guidelines dictate that prenatal ultrasound—a screening test—should be governed by expected clinical benefits—an opportunity for intervention. However, when women’s healthcare professionals themselves are pregnant, their access to ultrasound technology permits informal, personal use that may deviate from standard-of-care, e.g., for reassurance. Highlighting a poignant case wherein a pregnant (...) obstetrician’s personal ultrasound use had unforeseen negative consequences, we explore this issue within context of professional ethics and informal medical care. We discuss how women’s health professionals’ self-care may influence and inform prenatal care at large. We advocate curtailing informal prenatal ultrasound use, but also potentially broadening accepted indications for or relaxing proscriptions against ultrasounds for patients. Further research and updated, evidence-based, ethically-sound guidelines are needed. (shrink)

Common hospital and surgical center responses to the Covid‐19 pandemic included curtailing “elective” procedures, which are typically determined based on implications for physical health and survival. However, in the focus solely on physical health and survival, procedures whose main benefits advance components of well‐being beyond health, including self‐determination, personal security, economic stability, equal respect, and creation of meaningful social relationships, have been disproportionately deprioritized. We describe how female reproduction‐related procedures, including abortion, surgical sterilization, reversible contraception devices and in vitro fertilization, (...) have been broadly categorized as “elective,” a designation that fails to capture the value of these procedures or their impact on women's overall well‐being. We argue that corresponding restrictions and delays of these procedures are problematically reflective of underlying structural views that marginalize women's rights and interests and therefore threaten to propagate gender injustice during the pandemic and beyond. Finally, we propose a framework for triaging reproduction‐related procedures during Covid‐19 that is more individualized, accounts for their significance for comprehensive well‐being, and can be used to inform resumption of operations as well as subsequent restriction phases. (shrink)

In the USA, there are missed opportunities to diagnose hepatitis C virus in pregnancy because screening is currently risk-stratified and thus primarily limited to individuals who disclose history of injection drug use or sexually transmitted infection risks. Over the past decade, the opioid epidemic has dramatically increased incidence of HCV and a feasible, well-tolerated cure was introduced. Considering these developments, recent evidence suggests universal HCV screening in pregnancy would be cost-effective and several professional organisations have called for updated national policy. (...) Historically, universal screening has been financially disincentivised on the healthcare system level, particularly since new diagnoses may generate an obligation to provide expensive treatments to a population largely reliant on public health resources. Here, we provide ethical arguments supporting universal HCV screening in pregnancy grounded in obligations to respect for persons, beneficence and justice. First, universal prenatal HCV screening respects pregnant women as persons by promoting their long-term health outside of pregnancy. Additionally, universal screening would optimise health outcomes within current treatment guidelines and may support research on treatment during pregnancy. Finally, universal screening would avoid potential harms of risk-stratifying pregnant women by highly stigmatised substance use and sexual behaviours. (shrink)

Background: Little is known about U.S. healthcare provider views and practices regarding evidence, counseling, and shared decision-making about in-hospital versus out-of-hospital birth settings. Methods: We conducted 19 in-depth, semistructured, qualitative interviews of eight obstetricians, eight midwives, and three pediatricians from across the United States. Interviews explored healthcare providers’ interpretation of the current evidence and their personal and professional experiences with childbirth within the existing medical, ethical, and legal context in the United States. Results: Themes emerged concerning risks and benefits, decision-making, (...) and patient-provider power dynamics. Collectively, the narratives illuminated fundamental ideological tensions between in- and out-of-hospital providers arising from divergent assignment of value to described risks and benefits. The majority of physicians focused on U.S.-specific data demonstrating increased neonatal morbidity and mortality associated with delayed access to hospital-based interventions, thereby justifying hospital birth as the standard of care. By contrast, midwives emphasized data demonstrating fewer interventions and superior maternal and neonatal outcomes in high-income European countries, where out-of-hospital birth is more common for low-risk birthing people. A key gap in counseling was revealed, as no interviewees offered anticipatory counseling regarding birth setting options. Providers directly and indirectly illustrated the propensity for asymmetric power relations between birth providers and pregnant people, especially in hospital settings. Conclusions: The narratives highlight the common goal of optimizing maternal and neonatal outcomes despite tensions arising from divergent prioritization of specific maternal and neonatal risks. Our findings suggest opportunities to foster collaboration and optimize outcomes via mutual respect and improved integration of care. (shrink)

Melanie presented at twenty weeks of gestation to an obstetrics clinic in a critical access hospital in rural Vermont. She was excited to undergo routine fetal ultrasonography, but her obstetrician gave her grave news: the ultrasound revealed hypoplastic left heart syndrome, a devastating congenital heart defect. Initially, Melanie agreed in general to pursue surgical care for her fetus—a three‐stage process that has somewhat uncertain results and could only be done in tertiary care facilities far from her home in Vermont. A (...) week later, while the maternal fetal medicine and pediatric cardiology units made arrangements with colleagues in Boston, Melanie began having second thoughts. An ethics meeting was called to discuss conflicting clinician reactions to Melanie's dilemma. Most of the clinicians were stunned that the patient would change her mind. What advice should the ethics consultant offer the team about caring for Melanie? (shrink)

Research on opioid use in pregnancy is critically important to understand how the opioid epidemic has affected a generation of children, but also raises significant ethical and legal challenges. Embedded ethicists can help to fill the gaps in ethics oversight for such research, but further guidance is needed to help strike the balance between integration and independence.