AJOB Empirical Bioethics最新文献

Background: The allocation of scarce deceased donor kidneys is a complex process. Transplant providers are increasingly relying on constructs such as frailty and cognitive function to guide kidney transplant (KT) candidate selection. Patient views of the ethical issues surrounding the use of such constructs are unclear. We sought to assess KT candidates' attitudes and beliefs about the use of frailty and cognitive function to guide waitlist selection.

Methods: KT candidates were randomly recruited from an ongoing single-center cohort study of frailty and cognitive function. Semi-structured interviews were conducted, and thematic analysis was performed. Inductively derived themes were mapped onto bioethics principles.

Results: Twenty interviews were conducted (65% contact rate, 100% participation rate) (60% male; 70% White). With respect to the use of frailty and cognitive function in waitlisting decisions, four themes emerged in which participants: (1) valued maximizing a scarce resource (utility); (2) prioritized equal access to all patients (equity); (3) appreciated a proportional approach to the use of equity and utility (precautionary utility); and (4) sought to weigh utility- and equity-based concerns regarding social support. While some participants believed frailty and cognitive function were useful constructs to maximize utility, others believed their use would jeopardize equity. Patients were uncomfortable with using single factors such as frailty or cognitive impairment to deny someone access to transplantation; participants instead encouraged using the constructs to identify opportunities for intervention to improve frailty and cognitive function prior to KT.

Conclusions: KT candidates' values mirrored the current allocation strategy, seeking to balance equity and utility in a just manner, albeit with conflicting viewpoints on the appropriate use of frailty and cognitive impairment in waitlisting decisions.

Background: The COVID-19 pandemic has posed several ethical challenges worldwide. Understanding care providers' experiences during health emergencies is key to develop comprehensive ethical guidelines for emergency and disaster circumstances.Objectives: To identify and synthetize available empirical data on ethical challenges experienced by health care workers (HCWs) providing direct patient care in health emergencies and disaster scenarios that occurred prior to COVID-19, considering there might be a significant body of evidence yet to be reported on the current pandemic.Methods: A rapid review of qualitative studies and thematic synthesis was conducted. Medline and Embase were searched from inception to December 2020 using "public health emergency" and "ethical challenges" related keywords. Empirical studies examining ethical challenges experienced by frontline HCWs during health emergencies or disasters were included. We considered that ethical challenges were present when participants and/or authors were uncertain regarding how one should behave, or when different values or ethical principles are compromised when making decisions.Outcome: After deduplication 10,160 titles/abstracts and 224 full texts were screened. Twenty-two articles were included, which were conducted in 15 countries and explored eight health emergency or disaster events. Overall, a total of 452 HCWs participants were included. Data were organized into five major themes with subthemes: HCWs' vulnerability, Duty to care, Quality of care, Management of healthcare system, and Sociocultural factors.Conclusion: HCWs experienced a great variety of clinical ethical challenges in health emergencies and disaster scenarios. Core themes identified provide evidence-base to inform the development of more comprehensive and supportive ethical guidelines and training programmes for future events, that are grounded on actual experiences of those providing care during emergency and disasters.

Background: Many patients have three primary goals for how treatment decisions are made for them in the event of decisional incapacity. They want to be treated consistent with their preferences and values, they want their family to be involved in making decisions, and they want to minimize the stress on their family. The present paper investigates how patients' beliefs about surrogate decision-making influence which of these three goals they prioritize. Methods: Quantitative survey of 1,169 U.S. patients to assess their beliefs about surrogate decision-making, and how these beliefs influence patients' priorities for surrogate decision-making. Results: Most patients believed that families in general (68.8%) and their own family in particular (83.4%) frequently, almost always, or always know which treatments the patient would want in the event of incapacity. Patients with these beliefs were more likely to prioritize the goal of involving their family in treatment decision-making over the goal of minimizing family stress. Most patients (77.4%) also believed their family would experience significant stress from helping to make treatment decisions. However, patients' priorities were largely unchanged by this belief. Conclusions: Prior reports suggest that patients overestimate the extent to which their family knows which treatments they want in the event of decisional incapacity. The present analysis adds that these patients might be more likely to prioritize the goal of involving their family in treatment decision-making, even when this results in the family experiencing significant distress. This finding highlights that patients' misinformed beliefs about their family's knowledge might influence patients' priorities for surrogate decision-making, raising important questions for clinical practice, policy, and future research.

Supplemental data for this article is available online at https://doi.org/10.1080/23294515.2021.1983665.

Background: Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance.

Methods: We conducted qualitative, semi-structured interviews with 24 people living with HIV who had been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV.

Results: Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state's motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state's capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential.

Conclusions: Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives.

Background: Large amounts of capital are currently being invested in genomics companies across the "bench to clinic pipeline" - companies which are now shaping the future of biomedicine globally. Understanding the perspectives of people who work in such companies can contribute to shaping this industry in service of just and equitable futures of medicine.

Methods: Using in-depth interviews as the primary method, this paper analyzes perspectives on ethical and social issues in private sector genomics expressed by members of the commercial genomics industry in the US.

Results: Interviewees described a wide range of issues as pressing ethical concerns in commercial genomics. Key themes included concerns about diversity in genetic datasets, data governance and control, and pricing and profits in the industry. However, concern about diversity of datasets was not accompanied by expressions of concern about diversity in the industry workforce.

Conclusions: Most interviewees described concerns in the industry that are rather removed from their own work. But along with this "ethical distancing," moral concerns appeared to be the basis for competition amongst companies - to attract both employees and customers. Research in business ethics suggests that expanding moral analysis of one's own work helps improve day to day decision-making in the interest of justice. Opening space for people to examine ethics in their own subsector may provide a means for the private sector genomics industry to become a leader in ethics in the biosciences and a model for equity in our current moment of late capitalism.

Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make treatment decisions for decisionally-incapacitated patients.

This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n = 26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents' overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice.

Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient's best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient's preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups.

Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it.

Background: Gene drive technologies (GDTs) bias the inheritance of a genetic element within a population of non-human organisms, promoting its progressive spread across this population. If successful, GDTs may be used to counter intractable problems such as vector-borne diseases. A key issue in the debate on GDTs relates to what governance is appropriate for these technologies. While governance mechanisms for GDTs are to a significant extent proposed and shaped by professional experts, the perspectives of these experts have not been explored in depth.

Methods: A total of 33 GDT experts from different professional disciplines were interviewed to identify, better understand, and juxtapose their perspectives on GDT governance. The pseudonymized transcripts were analyzed thematically.

Results: Three main themes were identified: (1) engagement of communities, stakeholders, and publics; (2) power dynamics, and (3) decision-making. There was broad consensus amongst respondents that it is important to engage communities, stakeholders, and publics. Nonetheless, respondents had diverging views on the reasons for doing so and the timing and design of engagement. Respondents also outlined complexities and challenges related to engagement. Moreover, they brought up the power dynamics that are present in GDT research. Respondents stressed the importance of preventing the recurrence of historical injustices and reflected on dilemmas regarding whether and to what extent (foreign) researchers can legitimately make demands regarding local governance. Finally, respondents had diverging views on whether decisions about GDTs should be made in the same way as decisions about other environmental interventions, and on the decision-making model that should be used to decide about GDT deployment.

Conclusions: The insights obtained in this interview study give rise to recommendations for the design and evaluation of GDT governance. Moreover, these insights point to unresolved normative questions that need to be addressed to move from general commitments to concrete obligations.

Background: This study examines rural patients' perceived importance of knowing or being consulted about researchers' access and use of their personal data (identifiable and de-identified health information, and identifiable and de-identified non-health information) across five scenarios. This study also examines their views on stewardship or governance of their personal information by researchers in their healthcare systems.

Methods: We conducted a survey by mail. Data were analyzed using descriptive statistics. Multivariable regression analyses were conducted across each scenario and type of personal data with the same variables included in each model.

Results: The majority of participants said it was "very important/absolutely essential" to know the purpose of the study, to be asked every time, and to know the policies governing researcher access and use of their identifiable health information. Just over two-thirds of respondents thought it "very important/absolutely essential" to know who serves on the data governance committee and to have a community member serve. Distrust in healthcare organizations was positively correlated with the scenarios while willingness to give permission to donate leftover biological specimens was negatively correlated.

Conclusion: Our study findings indicate that the type of personal information being accessed and used generally matters to 1,407 patients living in rural Pennsylvania. We also demonstrate that knowing their healthcare organizations' governance policies and practices for managing their personal data is important to many rural Pennsylvania patients. Biomedical researchers need to recognize and attend to those differences as much as possible in order to expand opportunities for and participation in research by residents of these rural communities.

Supplemental data for this article is available online at.

Background: The philosophical debate about the roles of nature versus nurture in human flourishing is not new. But the rise of precision education-a growing field of research that encourages the use of genetic data to inform educational trajectory and interventions to better meet student needs-has renewed historical and ethical concerns. A major worry is that "genetic hype" may skew public perceptions toward a deterministic perception of the child's educational trajectory, regardless of the child's capacities, and underestimation of environmental factors affecting educational outcomes. We tested this hypothesis with parents and adults from the general public in the US.

Methods: A newly developed computerized implicit association test (IAT) to assess automatic associations between genetics or environments and student behaviors that are associated with educational achievement was administered to samples of parents of children below 21 years old (n = 450) and adults from the general public (n = 419). The samples were representative of the adult US population and adjusted to oversample Black/African American participants. An overall D score for participants' IATs (range: [-2, 2]) was calculated on the basis of the speed of participants' responses.

Results: The mean IAT score for both samples indicated stronger association between the quality of being a good student and environment rather than genetics (parents: mean=-0.146, t = -6.56, p < 0.001; general public: mean = -0.249, t = -9.45, p < 0.0001). Younger participants from the general public showed a stronger association between genetics and educational success than middle-aged participants (β = -0.301, p = 0.006).

Conclusion: The views of parents and the general public on behavioral genetics and education are complex but call for investment in creating educational environments that are supportive of student success. Future research is needed to understand differences across age groups and to explore views of other stakeholders involved in determining children's educational trajectories about the roles of nature versus nurture in precision education.