In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications.
Informed consent requirements for conducting research with human participants are set by institutional review boards (IRBs) following established guidelines. Despite this, researchers continue to face challenges in seeking and obtaining informed consent. This study discusses researchers' views of such problems in Lebanon and Qatar, which vary in research regulation. We conducted in-depth interviews with 52 academic researchers from various fields of research in both countries and analyzed them using thematic analysis. Important disjunctions emerged between IRB requirements and actual practice. Variations in obtaining informed consent were affected by the research context, type of research, and the prevalent cultural norms and values. Regulatory systems and guidelines for informed consent do not necessarily ensure ethical research conduct. Implications for improvement are presented.
A recent surge of research universities and human subjects research funding in the Arab world raises concerns about applied research ethics and oversight. In-depth interviews conducted with 52 researchers in Lebanon and Qatar about their research conduct and the problems they face while conducting it indicate that although researchers admit to the added value of institutional review board (IRB) functions, the researchers have several complaints, such as rigid and contextually insensitive requirements, delays, and inadequate resources at IRBs, and a lack of outreach and effective communication with researchers. The study discusses these challenges pointing to the need for socioculturally adaptive regulations and forms and strengthening outreach and communication between IRBs and their users to improve ethical practices. Implications for future research are also presented.
This study examined the psychometric characteristics of a 32-item modified version of the Ethical Issues Scale (EIS). Data were collected from 59 registered nurses at the American University of Beirut Medical Centre (AUBMC). Data were analyzed using WINSTEPS Rasch analysis software. The four-category EIS rating scale needs modification for future studies in Lebanon. All EIS scale items need rewording prior to translation into Arabic to avoid confusion among Lebanese nurses. Principal component analysis (PCA) of residuals indicated the possible presence of additional dimensions. Additional EIS items are needed to improve targeting.
This article explores ethical aspects of using open argumentation in person-centered care (PCC), where health professionals (HPs) openly criticize or contradict factual claims, assumptions, preferences, or value commitments of patients. We argue that suchdisputingmay be claimed to have an important place in advanced versions of PCC, but that it actualizes important clinical ethical aspects of doing such disputation well. This may prompt caution in the implementation of PCC, but also inspire educational and organizational reform. We also probe the notion of openly disputing with patients when PCC is applied in less standard settings (where it is nevertheless advocated), using the cases of children, psychiatry, and public health interventions, such as antibiotic stewardship programs, as examples. These contexts offer new reasons for why PCC may or should include open disputing with patients, but also introduce new ethical complications. Some of these may transform either to arguments against PCC implementation in these areas, or to a more open view of the extent a HP may seek to dominate patients in a PCC setting. We are especially skeptical of the meaningfulness of applying advanced PCC in areas of psychiatry with high levels of compulsory elements, such as forensic psychiatric detention.
The ethical discourse surrounding patients’ agential capacities, vis-à-vis their active participation in shared decision-making (SDM) in forensic psychiatric (FP) contexts, is an unexplored area of inquiry. The aim of this paper is to explore caregivers’ perceptions of patient agential capacities and institutional pathways and barriers to person centered care (PCC) in the context of FP. Following an exploratory qualitative design, we conducted eight semi-structured interviews with hands-on caregivers at an in-patient FP facility in Sweden. A deductive framework method of analysis was employed, and four themes emerged: “Fundamental Variability in Patient Capacity”, “Patient Participation: Narration or Compliance?”, “Antagonism Rooted in Power Struggles”, and “System Structure Thwarts Patient Release”. While the results generally paint a bleak picture for the possibility of a person-centered FP care, we describe a constrained version of PCC with high-level SDM dynamics which promotes a certain degree of patient empowerment while allowing care strategies, within set restrictions, to promote patient adherence and treatment progress.
Person centered care (PCC) invites ideas of shared responsibility as a direct result of its shared decision making (SDM) process. The intersection of PCC and psychiatric contexts brings about what I refer to as the responsibility problem, which seemingly arises when SDM is applied in psychiatric settings due to (1) patients’ potentially diminished capacities for responsibility, (2) tension prompted by professional reasons for and against sharing responsibility with patients, as well as (3) the responsibility/blame dilemma. This paper aims to do away with the responsibility problem through arguing for a functional approach to mental illness, a blameless responsibility ascription to the person with mental illness, as well as a nuanced understanding of SDM as part of an emancipation-oriented PCC model.
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