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Electronic health record (EHR) data are widely used in public health research, including in HIV-related studies, but are limited by potential bias due to incomplete and inaccurate information, lack of generalizability, and lack of representativeness. This study explores how workflow processes among HIV health care providers (HCPs), data scientists, and state health department professionals may potentially introduce or minimize bias within EHR data. One focus group with 3 health department professionals working in HIV surveillance and 16 in-depth interviews (ie, 5 people with HIV, 5 HCPs, 5 data scientists, and 1 health department professional providing retention-in-care services) were conducted with participants purposively sampled in South Carolina from August 2023 to April 2024. All interviews were transcribed verbatim and analyzed using a constructivist grounded theory approach, where transcripts were first coded and then focused, axial, and theoretically coded. The EHR data lifecycle originates with people with HIV and HCPs in the clinical setting. Data scientists then curate EHR data and health department professionals manage and use the data for surveillance and policy decision-making. Throughout this lifecycle, the three primary stakeholders (ie, HCPs, data scientists, and health department professionals) identified challenges with EHR processes and provided their recommendations and accommodations in addressing the related challenges. HCPs reported the influence of socio-structural biases on their inquiry, interpretation, and documentation of social determinants of health (SDOH) information of people living with HIV, the influence of which is proposed to be mitigated through people living with HIV access to their EHRs. Data scientists identified limited data availability and representativeness as biasing the data they manage. Health department professionals face challenges with delayed and incomplete data, which may be addressed statistically but require consideration of the data's limitations. Overall, bias within the EHR data lifecycle persists because workflows are not intentionally structured to minimize bias and there is a diffusion of responsibility for data quality between the various stakeholders. From the perspective of various stakeholders, this study describes the EHR data lifecycle and its associated challenges as well as stakeholders' accommodations and recommendations for mitigating and eliminating bias in EHR data. Based upon these findings, studies reliant on EHR data should adequately consider its challenges and limitations. Throughout the EHR data lifecycle, bias could be reduced through an inclusive, supportive health care environment, people living with HIV verification of SDOH information, the customization of data collection systems, and EHR data inspection for completeness, accuracy, and timeliness. Future research is needed to further identify instances where bias is introduced and how it can best be mitigated and eliminated across the EHR data lifecycle. Systematic changes are necessary to reduce instances of bias between data workflows and stakeholders.

IntroductionThe emergence of Big Data health research has exponentially advanced the fields of medicine and public health but has also faced many ethical challenges. One of most worrying but still under-researched aspects of the ethical issues is the risk of potential biases in data sets (eg, electronic health records (EHR) data) as well as in the data curation and acquisition cycles. This study aims to develop, refine and pilot test an ethical framework-guided instrument for assessing bias in Big Data research using EHR data sets.Methods and analysisEthical analysis and instrument development (ie, the EHR bias assessment guideline) will be implemented through an iterative process composed of literature/policy review, content analysis and interdisciplinary dialogues and discussion. The ethical framework and EHR bias assessment guideline will be iteratively refined and integrated with preliminary summaries of results in a way that informs subsequent research. We will engage data curators, end-user researchers, healthcare workers and patient representatives throughout all iterative cycles using various formats including in-depth interviews of key stakeholders, panel discussions and charrette workshops. The developed EHR bias assessment guideline will be pilot tested in an existing National Institutes of Health (NIH) funded Big Data HIV project (R01AI164947).Ethics and disseminationThe study was approved by Institutional Review Boards at the University of South Carolina (Pro00122501). Informed consent will be provided by the participants in the in-depth interviews. Study findings will be disseminated with key stakeholders, presented at relevant workshops and academic conferences, and published in peer-reviewed journals.

There is a curious asymmetry in cases where the use of religious language involves a breakdown in communication and leads to a seemingly intractable dispute. Why does the use of religious language in such cases almost always arise on the side of patients and their families, rather than on the side of clinicians or others who work in healthcare settings? I suggest that the intractable disputes arise when patients and their families use religious language to frame their problem and the possibilities of solution. Unlike clinicians, they are not bilingual and thus lack the capacity to understand and negotiate differences in terms that are responsive to those who work in healthcare settings. After considering a representative case, I explore whether an ethics consultant or chaplain can function as a translator and suggest that, at best, such efforts at mediation depend on contingent aspects of a case and will only be partially successful. To appreciate limits on the role for bilingual translators, I consider a futility dispute where a parent using religious language demands that everything be done for a permanently unconscious child. I challenge the traditional interpretation that says the parent values “mere duration of biological life irrespective of quality.” From a religious perspective, human life is never “merely biological.” This effort to slot the dispute into standard philosophical schemas misses what is crucial in the dispute. I suggest that a better interpretation views the dispute at a meta-level as one about whether withholding and withdrawing care is morally distinguishable from killing. Curiously, this interpretation makes the advocate of futile care into an ally of those “quality of life” advocates who also challenge this distinction. The crux of their dispute now rests on the normative ethics of killing. While I think my interpretation comes much closer to the views of many who demand ‘futile care,’ I suggest that it still falls short because of the way it reconstructs the religious concerns in nonreligious terms. I close by considering an analogy between the language of suffering and the language of faith, suggesting that both require a much richer understanding of the narratives that orient the lives of patients and their families.

This essay considers implications of formal mereologies and ontologies for medical metaphysics. Edward Fried’s extensional mereological account of the human body is taken as representative of a prominent strand in analytic metaphysics that has close affinities with medical positivism. I show why such accounts fail. First, I consider how Fried attempts to make sense of the medical case of Barney Clark, the first recipient of an artificial heart, and show that his analytic metaphysical categories do not have the right kind of fit with the case. A proper medical metaphysic should involve a richer two way dialogue with medicine, and it should not just “apply” formal accounts worked out in other settings. Second, I argue that any effort to account for real wholes with extensional mereological sums requires all sorts of ad hoc , supplementary mechanisms that do the real work, and the full repertoire of these mechanisms involves inconsistencies and semantic shifts. Finally, I consider an alternative strand of work on non-extensional whole/part relations that is closer to medicine and that can deepen reflection on some core problems in bioethics, for example, associated with the determination of death when an organism ceases to function as a whole. In addition to the utility such formal ontologies have for addressing traditional problems such as the determination of death, philosophers of medicine should appreciate the increasingly influential role such formal tools are playing in the development of data system ontologies. Assumptions integral to these ontologies have far reaching implications for the way future research and practice in medicine will be conducted, and much greater critical reflection is needed on the full range of issues associated with the development and use of such medical ontologies.

Insufficient attention has been given to ethical and social issues integral to nanomedicine. Part of this deficiency arises from some mistaken assumptions about ethics. I consider five of these: that ethics is only important when a technology is mature (reactionary ethics); that there are no new ethical issues in nanomedicine; that ethics involves a kind of risk assessment that is already being conducted; that ethics is a hindrance to science; and that ethics is a luxury for an ideal world. After critically assessing these assumptions, I consider two types of nanomedicine and the kinds of ethical issues they raise. Type 1 nanomedicine is of an incremental kind, and proper ethical assessment of the issues must involve a fine grained study of the specific application. Type 2 nanomedicine is of a more foundational, programmatic kind. Ethical issues raised by these more programmatic developments include challenges integral to formation of interdisciplinary teams; issues related to intellectual property, authorship and publication; development of informed consent and confidentiality protections associated with new data sets; future challenges to the clinician-–patient relation and personalized medicine. Ethical analysis should also consider some of the reductionistic implications of engineering models and metaphors integral to nanomedicine, as well as uses of nanomedicine for non-medical purposes, such as human enhancement. Many of these challenges concern rate-limiting steps in nanomedical research, and they should be prominently featured in developing nanomedicine initiatives.

The traditional contrast between naturalist and normativist disease concepts fails to capture the most salient features of the health concepts debate. By using health concepts as a window on background notions of medical science and ethics, I show how Christopher Boorse (an influential naturalist) and Lennart Nordenfelt (an influential normativist) actually share deep assumptions about the character of medicine. Their disease concepts attempt, in different ways, to shore up the same medical model. For both, health concepts function like demarcation criteria in the philosophy of science: they mark off the jurisdiction of medical science, and protect it from an inappropriate intrusion of socioeconomic factors, which threaten the integrity of modern medicine. These views are challenged by new developments in healthcare such as managed care and total quality review. To frame the health concepts debate in a way that better captures the issues integral to these new developments, I advance a new way of reading the distinction between weak and strong normativists. Strong normativists are skeptical of the demarcation project, think facts and values cannot be disentangled, and hold that socioeconomic conditions unavoidably influence how pathology is understood. The new health concepts debate should be framed as one between weak and strong normativists, and it concerns how we should respond to the current developments in health care.

In current research on systems biology and nanomedicine, we often find an ideal of a new science-based preventive medicine. I consider how disease, cause, explanation, diagnosis, and treatment are understood within this ideal, with special attention to the role of nanoscience and technology in elucidating the “circuit diagram” of a healthy system. I argue that the developmental systems theory that informed George Engel’s biopsychosocial model addresses some deficiencies in the current systems ideal, but it needs to be integrated with an ethical analysis that is more attentive to the socioeconomic, cultural, and institutional factors that condition how we understand and manage disease. We also need a richer account of top-down causal paths if we are to appropriately understand diseases as disruptions of inter- and intra-systemic integrity.

Here we consider two ways that nanomedicine might be disruptive. First, low‐end disruptions that are intrinsically unpredictable but limited in scope, and second, high end disruptions that involve broader societal issues but can be anticipated, allowing opportunity for ethical reflection.

The ethical issues integral to embryo research and brain death are intertwined with comprehensive views of life that are not explicitly discussed in most policy debate. I consider three representative views – a naturalist, romantic, and theist – and show how these might inform the way practical ethical issues are addressed. I then consider in detail one influential argument in embryo research that attempts to bypass deep values. I show that this twinning argument is deeply flawed. It presupposes naturalist commitments that are at issue in the embryo research debate, and exhibits a blindness to alternative philosophical viewpoints. By considering the work of Hans Driesch, the discoverer of the facts of embryology integral to the twinning argument, I show how the twinning facts are compatible with romantic and theistic accounts that affirm full moral status for the early embryo. While these alternative interpretations might have a tenuous status in current scientific debate, they should be respected in ethical and policy debate.