Lost in translation: the history of the Ebers Papyrus and Dr. Carl H. von Klein.

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. A German immigrant and surgeon in the American Midwest, von Klein spent twenty-some years meticulously translating and annotating the Papyrus, but ultimately his manuscript was destroyed. In this paper, we examine the societal- and personal-scale forces that thwarted his efforts to transform our understanding of the history of medicine.

Selling Clinical Biospecimens: Guidance for Researchers and Private Industry.

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.

The White Coat Cape: An Ethical Analysis of Emerging Therapies to Treat Spinal Muscular Atrophy.

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. Contemporary analyses of innovative therapies, compassionate use medications, off-label usage, and emerging therapies tend to focus on the importance of informed consent in framing the ethical dimensions of these medications. This manuscript utilizes a narrative framework of "rescue" to explore the competing perspectives of optimistic physicians and parents, who may decline the therapies finding the benefit-burden profile does not weigh in favor of their use. Ultimately, this paper concludes that such refusal should be considered ethically permissible until such time as more long-term data are available for these medications and their cost has decreased substantially.

Choosing a Side: Clinician Perspective Taking in Ethics Consultations.

AbstractEthics consultation is a service provided to patients, families, and clinicians to support decisions during ethical dilemmas. This study is a secondary qualitative analysis of 48 interviews from clinicians involved in an ethics consultation at a large academic health center. An inductive secondary analysis of this data set led to the emergence of one key theme, the apparent perspective the clinicians adopted as they recalled a specific ethics case. This article presents a qualitative analysis of the propensity of clinicians involved in an ethics consultation to adopt the subjective viewpoints of their team, their patient, or both simultaneously. Clinicians demonstrated an ability to take the patient perspective (42%), the clinician perspective (31%), or the clinician-patient perspective (25%). Our analysis suggests the potential for narrative medicine to build the empathy and moral imagination necessary to bridge the gap in perspectives between key stakeholders.

Development of Written Materials for Participants in an Alzheimer's Disease and Related Dementias Screening Trial.

Given 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.

Perceptions of the ethical permissibility of strict travel restrictions to mitigate transmission of SARS-CoV-2.

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. This paper presents the results of a survey of U.S. adults' opinions of the ethical permissibility of both state-to-state and international travel restrictions to mitigate transmission of SARS-CoV-2. Our research revealed overall high agreement with the ethical permissibility of both state-to-state and international travel restrictions, though we saw significant difference across political party affiliation and conservative/liberal ideologies. Other factors associated with agreement with state-to-state travel restrictions included increasing education, increasing income, and both high and low commitment altruism. When considering international travel restrictions, income, education, and low commitment altruism were associated with increased agreement with the ethical permissibility of international travel restrictions. Ethical analysis and implications are explored.

Influenza vaccination in the time of COVID-19: A national U.S. survey of adults.

INTRODUCTION: 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. Participants reported prior influenza vaccination (yes/no during prior 12 months) and anticipated vaccination (yes/no during next 12 months). Covariates included demographic characteristics (e.g., gender, race-ethnicity, political ideology), general beliefs (e.g., benefits of vaccines, altruistic attitudes), and COVID-19 health beliefs and experiences (COVID-19 worry and severity, perception of COVID-19 as a community threat, knowing someone with COVID-19). For each group, hierarchical multivariable logistic regression was conducted with intent to vaccinate as the outcome. RESULTS: Among participants (n = 3502), 47% did not receive influenza vaccine in the prior 12 months and 53% had; 25.5% of non-vaccinators and 91.9% of vaccinators intended future vaccination. For non-vaccinators, odds of intending vaccination was associated with race/ethnicity (Hispanics were more likely to intend than white-NH; AOR = 1.74; 95% CI = 1.23-2.4), greater perceived benefits of vaccination (AOR = 2.19; 95% CI = 1.88-2.54), and perception of COVID-19 as a community threat (AOR = 1.91; 95% CI = 1.49-2.45). For vaccinators, odds of intending vaccination was associated with age (AOR = 1.04; 95% CI = 1.03-1.05), race/ethnicity (Black-NH and Other-NH were less likely to intend than white-NH, AOR = 0.60; 95% CI = 0.36-0.999; and AOR = 0.45; 95% CI = 0.24-0.84, respectively), greater perceived benefits of vaccination (AOR = 1.88; 95% CI = 1.45-2.45) and greater perception of collective benefits of vaccines (AOR = 1.48; 95% CI = 1.15-1.90). CONCLUSIONS: The COVID-19 pandemic may have served as a cue to action for influenza vaccination intention among some prior non-vaccinators whereas intention among prior vaccinators is more related to positive attitudes toward vaccination.

Exploring parents' perceptions of the value of pediatric genetic counseling patient letters: A qualitative study presenting lessons learned.

Genetic counseling patient letters are a valuable supplement to genetic counseling practice. As the demand for genetic services increases, improving efficiency in daily tasks such as letter writing could improve genetic counselor workflow. Additionally, understanding the value recipients place on the content of these letters prior to creating efficiencies is essential toward ensuring that the utility of these letters is not lost. To better understand parents' perceptions of the letter's value in the pediatric genetic counseling setting, we employed a qualitative design involving thirteen parents of children who received a patient letter following their diagnosis. Parents participated in a semi-structured focus group, interview, or phone interview, and the data were analyzed using thematic analysis. In addition to gathering perceptions of their child's letter, we sought to learn preferences for letter length, formatting, and level of detail by asking for verbal and written feedback on three different letter formats created for a fictional patient. We used self-determination theory (SDT) framework to create the sample letters, which states that an individual's experience of autonomy, competence, and relatedness can impact their ability to engage in activities. This includes caring for a child with special medical needs. While the findings from this work reinforced the importance of written communication for patients as seen in previous research, this work uncovered three major themes about the letter's value: (a) elements such as readability and content impact parent feelings of autonomy and improve competence moving forward with their child's care; (b) parents value written acknowledgment of the emotional impact of the diagnosis; and (c) parents use the letter as a tool to communicate their child's diagnosis with others. These results can be used for creating comprehensible patient letters that support autonomy, competence, and relatedness.

Public perceptions of the effectiveness of recommended non-pharmaceutical intervention behaviors to mitigate the spread of SARS-CoV-2.

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. METHODS: In May 2020, we conducted a cross-sectional survey among U.S. adults (N = 3,474). The primary outcome was a six-item measure assessing perceived effectiveness of recommended behaviors to prevent SARS-CoV-2 infection from 1 (not at all effective) to 5 (extremely effective). The sample was divided into "higher" and "lower" perceived effectiveness groups. Covariates included demographics, healthcare characteristics, and health beliefs. Variables that were significant at p<0.01 in bivariate analyses were entered into a multivariable logistic regression and a best-fit model was created using a cutoff of p<0.01 to stay in the model. RESULTS: Mean age was 45.5 years and most participants were non-Hispanic White (63%) and female (52.4%). The high perceived effectiveness group was slightly larger than the low perceived effectiveness group (52.7% vs. 47.3%). Almost all health belief variables were significant in the best-fit regression model. COVID-19-related worry (aOR = 1.82; 95% CI = 1.64-2.02), and perceived threat to physical health (aOR = 1.32; 95% CI = 1.20-1.45) were positively associated with perceived effectiveness while perceived severity of COVID-19 (0.84; 95% CI = 0.73-0.96) and perceived likelihood of infection (0.85; 95% CI = 0.77-0.94) switched directions in the adjusted model and were negatively associated with perceived effectiveness. CONCLUSIONS: This research indicates people generally believe NPI are effective, but there was variability based on health beliefs and there are mixed rates of engagement in these behaviors. Public health efforts should focus on increasing perceived severity and threat of SARS-CoV-2-related disease, while promoting NPI as effective in reducing threat.

A National Survey Assessing SARS-CoV-2 Vaccination Intentions: Implications for Future Public Health Communication Efforts.

With SARS-CoV-2 vaccines under development, research is needed to assess intention to vaccinate. We conducted a survey (N = 3,159) with U.S. adults in May 2020 assessing SARS-CoV-2 vaccine intentions, intentions with a provider recommendation, and sociodemographic and psychosocial variables. Participants had high SARS-CoV-2 vaccine intentions (M = 5.23/7-point scale), which increased significantly with a provider recommendation (M = 5.47). Hierarchical linear regression showed that less education and working in health care were associated with lower intent, and liberal political views, altruism, and COVID-19-related health beliefs were associated with higher intent. This work can inform interventions to increase vaccine uptake, ultimately reducing COVID-19-related morbidity and mortality.

International Travel for Living Donor Kidney Donation: A Proposal for Focused Screening of Vulnerable Groups.

As 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. However, there is very little written about this practice from the perspective of the US transplant system, and there is little in the way of guidance (either legal or ethical) to assist centers that accommodate it in distinguishing between ethically permissible travel for transplant and what could potentially be human trafficking for organ removal. This article will present an ethical analysis of travel for organ donation with particular attention to lessons that can be drawn from living donor donation in other countries. This inquiry is particularly germane because Organ Procurement and Transplantation Network has promulgated guidelines with respect to obligations owed to living donors, but those guidelines appear to assume that the donor is a US resident. The critical question then is whether or to what extent those guidelines are applicable to the instant scenario in which the living donor is a nonresident. In addition, this article addresses several critical ethical concerns implicated by the often vulnerable populations from which donors are drawn. Finally, this article proposes that focused inquiry by transplant centers is necessary when donors are nonresidents.

Anticipatory Waivers of Consent for Pediatric Biobanking.

As 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. Accordingly, bright-line legal concepts of majority or competency do not accurately capture the emerging capacity for autonomous decision-making of many pediatric research participants and unnecessarily complicate the issues about contacting participants at the age of majority to obtain consent for the continued or first use of their biospecimens that were obtained during childhood. We believe the proposed framework provides an ethically sound balance between the concern for potential exploitation of vulnerable populations, the impetus for the federal regulations governing research with children, and the need to conduct valuable research in the age of genomic medicine.

How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative.

Adolescents 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. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.