Yale Journal of Biology and Medicine最新文献

Despite the presumed value of advance directives, research to demonstrate impact has shown mixed results. For advance directives to serve their role promoting patient autonomy, it is important that patients be informed decision makers. The capacity to make decisions depends upon understanding, appreciation, reasoning, and communication. Advance directives are in part faulty because these elements are often limited. The present paper explores how the application of digital technology could be organized around a framework promoting these four elements. Given the state of digital advancements, there is great potential for advance directives to be meaningfully enhanced. The beneficial effects of incorporating digital technology would be maximized if they were organized around the aim of making advance directives not only documents for declaring preferences but also ethics-driven tools with decision aid functionality. Such advance directives would aid users in making decisions that involve complex factors with potentially far-reaching impact and would also elucidate the users' thought processes to aid those tasked with interpreting and implementing decisions based on an advance directive. Such advance directives might have embedded interactive features for learning; access to content that furthers one's ability to project oneself into possible, future scenarios; review of the logical consistency of stated preferences; and modes for effective electronic sharing. Important considerations include mitigating the introduction of bias depending on the presentation of information; optimizing interfacing with surrogate decision makers and treating clinicians; and prioritizing essential components to respect time constraints.

Cannabis and health research continue to largely ignore the usage patterns, perceptions, and medically related use in Spanish-speaking communities. The primary aim of this study was to collect data among Spanish-speaking communities on cannabis use that specifically characterizes granular demographic information, medically motivated and recreational use patterns including potency of products, medical motivations for use, and what perceptions are held as to risks and benefits. Secondarily, exploratory analyses were made to investigate potential effects of location or acculturation status. Five hundred forty-nine individuals completed the survey, including 294 residing in the United States (US) (M_age =31.8, SD=9.72; 154 women, 137 men, 3 non-binary and self-described individuals), 174 residing outside of the US (International) (M_age =26.6, SD=8.75; 77 women, 96 men, 1 non-binary and self-described individuals), and 81 who did not report country of residence (Unknown location) (M_age =26.7, SD=7.37; 17 women, 61 men, 3 non-binary and self-described individuals). Overall use was mostly recreational, while the US group was significantly more motivated by medical or combined medical and recreational reasons than the other two groups (p=0.02). The most common reason for medical use was anxiety or depression (14% of sample). The US group also smoked or vaporized significantly more often than the other two groups and was more likely to include daily users (p<0.001). The sample generally viewed the effects of cannabis use more favorably than negatively, but there were significant differences in these views between users and non-users. The rich heterogeneity suggested by these data belies the importance of taking an equity focused approach to cannabis research and will help to improve representation in the field.

Feedback during clinical rotations can be valuable in improving medical student education, but it is unclear what effect such feedback has on subsequent clinical performance and also which feedback topics are the most important in student growth and education. We compared medical student clinical performance before and after mid-clerkship feedback in a Neurology clerkship, with evaluators at the mid-clerkship and at the end blinded to the others' comments. We found that the most important areas holding back student clinical performance were communication, interpersonal interactions, and work ethic rather than textbook knowledge, or the ability to take a history, and do a physical and neurologic examination. Further, students who had concerning comments at the mid-clerkship feedback session usually continued to have the same problems after the feedback (in an admittedly short clerkship). The results suggest that more attention should be given to communication and other interpersonal skills and involvement in the clinical service during feedback sessions and that feedback continue over a much longer period than during a relatively brief Neurology clerkship alone.

After just over 2 years, the COVID-19 pandemic continues to contribute to extensive morbidity and mortality worldwide. In addition to the burden and loss caused by the virus itself, collateral consequences of the pandemic wreak havoc on the global economy, disrupt essential health care services and childhood education, and weaken existing mechanisms of preventing other infectious diseases such as HIV and tuberculosis (TB). These impacts are unequally felt in low- and middle-income countries due to an insufficient supply of COVID-19 vaccines and an unfair allocation process of distributing vaccines worldwide. An emphasis on equity throughout the continued scaling up of the global COVID-19 vaccination program with production, allocation, and distribution of COVID-19 vaccines could begin to mitigate the disparities in vaccinations seen across the world. Current policy solutions including COVAX, intellectual property waivers, technology transfer in South Africa, and dose donations are examined to evaluate efficacy in increasing equitable access to COVID-19 vaccines.

Scientists have identified a "diversity gap" in genetic samples and health data, which have been drawn predominantly from individuals of European ancestry, as posing an existential threat to the promise of precision medicine. Inadequate inclusion as articulated by scientists, policymakers, and ethicists has prompted large-scale initiatives aimed at recruiting populations historically underrepresented in biomedical research. Despite explicit calls to increase diversity, the meaning of diversity - which dimensions matter for what outcomes and why - remain strikingly imprecise. Drawing on our document review and qualitative data from observations and interviews of funders and research teams involved in five precision medicine research (PMR) projects, we note that calls for increasing diversity often focus on "representation" as the goal of recruitment. The language of representation is used flexibly to refer to two objectives: achieving sufficient genetic variation across populations and including historically disenfranchised groups in research. We argue that these dual understandings of representation are more than rhetorical slippage, but rather allow for the contemporary collection of samples and data from marginalized populations to stand in as correcting historical exclusion of social groups towards addressing health inequity. We trace the unresolved historical debates over how and to what extent researchers should procure diversity in PMR and how they contributed to ongoing uncertainty about what axes of diversity matter and why. We argue that ambiguity in the meaning of representation at the outset of a study contributes to a lack of clear conceptualization of diversity downstream throughout subsequent phases of the study.

The principle of beneficence in health research implies the effort of researchers to minimize risk to participants and maximize benefits to participants and society, which could be considered an abstract definition. Therefore, the benefits are not easily conceived by researchers who fail to achieve their goal, which is to privilege the well-being of participants. The purpose of this work was to describe and discuss the theoretical elements that support the principle of beneficence so that their knowledge allows designing and granting adequate benefits to participants. The present document defines the principle of beneficence. It also analyzes the maximization of benefits, the distinctions between different classifications of benefits, and the differentiation from compensations or incentives. With all this information, researchers must do a critical deliberation to select adequate benefits for participants of their studies, considering the type of study, potential participants, probability of risk, among others. These benefits should not be understood as a charity that researchers grant to the participant; they should be conceived as any form of action in favor of the well-being of participants. Participants must always be considered as moral agents, responsible for deciding whether the benefits would outweigh the possible negative unintended consequences of a particular study. Finally, no risk should be taken if it is not commensurate or proportional to the benefit of the research study.

Preexposure prophylaxis for HIV is a drug that reduces the risk for an HIV-negative person to acquire HIV if taken prior to sex. It has been suggested that it is important for resource allocation decisions that there are alternatives (such as abstinence, masturbation, etc.) for individuals potentially benefitted by this prophylaxis. In this paper we explore this idea from an ethical perspective in relation to three notions often discussed in priority setting ethics, namely responsibility, outcomes, and severity of disease. While the relevance of alternatives may be explained in terms by responsibility-sensitive priority setting, such a view comes with several challenges. We then discuss two other ways in which this intuition could be better explained: (a) in terms of total outcome of health, and (b) in terms of severity of the condition.

Early initiation of end-of-life (EOL) conversations has been shown to improve patient agency in dying, increase early access to hospice care, and facilitate a dignified death. Despite the benefits of early initiation, EOL conversations do not occur as readily as physicians or patients wish. While medicine is commonly considered both a science and an art, increasing medicalization may narrow a clinician's focus towards procedures or specialized clinical frameworks rather than a patient's end-of-life wishes. Since physicians are ambassadors of clinical knowledge and are trusted patient advocates, it is important they facilitate EOL conversations early in the dying process. Patients desire their physicians to convene these conversations. However, physicians are often hesitant to do so. Notable theologians, philosophers, and physicians offer a broad framework outlining the importance of physician-led EOL conversations.