J Med Libr Assoc
October 2023
While the Ebers Papyrus is understood to be one of the oldest and most complete contemporaneous perspectives on Ancient Egyptian healing practices, nothing has yet been said about the biography of its first English-language translator, Dr. Carl H. von Klein.
View Article and Find Full Text PDFJ Law Med Ethics
September 2023
The recently revised Common Rule requires that donors of biospecimens for research be informed if their specimens might be used for commercial profit. The Common Rule, however, does not apply to sharing or selling de-identified biospecimens that are "leftover" from clinical uses. As a result, many medical researchers remain uncertain of their legal and ethical obligations when a commercial entity expresses interest in these specimens.
View Article and Find Full Text PDFSemin Pediatr Neurol
April 2023
The recent emergence of promising therapies to treat neuromuscular diseases such as spinal muscular atrophy raises important questions regarding the ethical permissibility of allowing a parent to refuse these Food and Drug Administration-approved drugs. The 3 most recent drugs targeting spinal muscular atrophy have all been approved since 2019, lack long-term data regarding potential side-effects and long-term benefits, and are costly. Indeed, onasemnogene abeparvovec-xioi (Zolgensma) has been called the most expensive drug in the world.
View Article and Find Full Text PDFGiven that participants' experiences in clinical trials include a variety of communication touchpoints with clinical trial staff, these communications should be designed in a way that enhances the participant experience by paying attention to the self-determination theoretical concepts of competence, autonomy, and relatedness. In this feature, we argue that clinical trial teams need to consider the importance of how they design their written participant communication materials, and we explain in detail the process our multidisciplinary team took to design written materials for the patient and family caregiver participants in our Alzheimer's disease and related dementias (ADRD) screening trial. This article concludes with suggested guidance and steps for other clinical trial teams.
View Article and Find Full Text PDFTransp Res Interdiscip Perspect
June 2022
Although there has been extensive exploration of public opinion surrounding many non-pharmaceutical interventions (NPIs) aimed at mitigating transmission of SARS-CoV-2 (e.g. mask-wearing and social distancing), there has been less discussion of the public's perception of the ethical appropriateness other NPIs.
View Article and Find Full Text PDFIntroduction: Decisions about influenza vaccination for fall-winter 2020 were made against the backdrop of the COVID-19 pandemic. During May 2020, the authors examined intended vaccination in the next 12 months in relationship to demographic variables, healthcare attitudes, and personal COVID-19 experiences for two samples of adults--those who did not receive influenza vaccine during the prior 12 months, and those who did.
Methods: In May 2020, a cross-sectional online survey was conducted with a national US sample.
Background: The COVID-19 pandemic is an unprecedented public health threat, both in scope and response. With no vaccine available, the public is advised to practice non-pharmaceutical interventions (NPI) including social distancing, mask-wearing, and washing hands. However, little is known about public perceptions of the effectiveness of these measures, and high perceived effectiveness is likely to be critical in order to achieve widespread adoption of NPI.
View Article and Find Full Text PDFWith SARS-CoV-2 vaccines under development, research is needed to assess intention to vaccinate. We conducted a survey ( = 3,159) with U.S.
View Article and Find Full Text PDFAs the gap between organ donors and patients on the recipient waiting list grows, residents of the United States who are in need of kidney transplantation occasionally contract with living donors from outside the United States. Those donors then travel to the United States to undergo living donor kidney donation at US transplant centers. This practice is not limited to the United States and occurs with some regularity around the world.
View Article and Find Full Text PDFAs pediatric biobank research grows, additional guidance will be needed about whether researchers should always obtain consent from participants when they reach the legal age of majority. Biobanks struggle with a range of practical and ethical issues related to this question. We propose a framework for the use of anticipatory waivers of consent that is empirically rooted in research that shows that children and adolescents are often developmentally capable of meaningful deliberation about the risks and benefits of participation in research.
View Article and Find Full Text PDFAdolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes.
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