Finding Medical Photographs of Patients Online: Randomized, Cross-Sectional Study.

BACKGROUND: Photographs from medical case reports published in academic journals have previously been found in online image search results. This means that patient photographs circulate beyond the original journal website and can be freely accessed online. While this raises ethical and legal concerns, no systematic study has documented how often this occurs. OBJECTIVE: The aim of this cross-sectional study was to provide systematic evidence that patient photographs from case reports published in medical journals appear in Google Images search results. Research questions included the following: (1) what percentage of patient medical photographs published in case reports were found in Google Images search results? (2) what was the relationship between open access publication status and image availability? and (3) did the odds of finding patient photographs on third-party websites differ between searches conducted in 2020 and 2022? METHODS: The main outcome measure assessed whether at least 1 photograph from each case report was found on Google Images when using a structured search. Secondary outcome variables included the image source and the availability of images on third-party websites over time. The characteristics of medical images were described using summary statistics. The association between the source of full-text availability and image availability on Google Images was tested using logistic regressions. Finally, we examined the trend of finding patient photographs using generalized estimating equations. RESULTS: From a random sample of 585 case reports indexed in PubMed, 186 contained patient photographs, for a total of 598 distinct images. For 142 (76.3%) out of 186 case reports, at least 1 photograph was found in Google Images search results. A total of 18.3% (110/598) of photographs included eye, face, or full body, including 10.9% (65/598) that could potentially identify the patient. The odds of finding an image from the case report online were higher if the full-text paper was available on ResearchGate (odds ratio [OR] 9.16, 95% CI 2.71-31.02), PubMed Central (OR 7.90, 95% CI 2.33-26.77), or Google Scholar (OR 6.07, 95% CI 2.77-13.29) than if the full-text was available solely through an open access journal (OR 5.33, 95% CI 2.31-12.28). However, all factors contributed to an increased risk of locating patient images online. Compared with the search in 2020, patient photographs were less likely to be found on third-party websites based on the 2022 search results (OR 0.61, 95% Cl 0.43-0.87). CONCLUSIONS: A high proportion of medical photographs from case reports was found on Google Images, raising ethical concerns with policy and practice implications. Journal publishers and corporations such as Google are best positioned to develop an effective remedy. Until then, it is crucial that patients are adequately informed about the potential risks and benefits of providing consent for clinicians to publish their images in medical journals.

Folie du système? Preventing Violence Against Nurses in In-patient Psychiatry.

Violence against psychiatric nurses is a difficult reality of work on in-patient psychiatry units. Health care providers and managers, nursing unions, and workplace protection agencies are looking for solutions to improve safety and quality of care. We are suggesting that simultaneous to this solution-seeking, there is also a need to critically reflect on the nature of violence itself within in-patient psychiatric settings. In this article we consider the gendered dynamics of power and violence within the in-patient psychiatric setting. The nursing profession is over 90% female. Given that violence in society often has a 'gendered' nature, and in light of a report from the Ontario Council of Hospital Unions which likened violence against nurses to domestic violence, we have put forth a view of the acute in-patient psychiatric milieu that considers gender and power in its analysis of violence against nurses. Intended to encourage enquiry into our pre-suppositions as health care providers, we use Foucauldian and feminist theories to up-end our notions of "anti-violence technologies", and to consider the unique and risky position that psychiatric nurses occupy as carers, care providers, and "anti-violence officers". We conclude by posing ethical questions which may be of interest for professional development, care planning, team building, and clinical ethics and education.

Documenting Research with Transgender, Nonbinary, and Other Gender Diverse (Trans) Individuals and Communities: Introducing the Global Trans Research Evidence Map.

There is limited information about how transgender, nonbinary, and other gender diverse (trans) people have been studied and represented by researchers. The objectives of this study were to: (1) increase access to trans research; (2) map and describe trans research across subject fields; and (3) identify evidence gaps and opportunities for more responsible research. Eligibility criteria were established to include empirical research of any design, which included trans participants or their personal information and that was published in English in peer-reviewed journals. A search of 15 academic databases resulted in 25,230 references; data presented include 690 trans-focused articles that met the screening criteria and were published between 2010 and 2014. The 10 topics studied most frequently were: (1) therapeutics and surgeries; (2) gender identity and expression; (3) mental health; (4) biology and physiology; (5) discrimination and marginalization; (6) physical health; (7) sexual health, HIV, and sexually transmitted infections; (8) health and mental health services; (9) social support, relationships, and families; and (10) resilience, well-being, and quality of life. This map also highlights the relatively minor attention that has been paid to a number of study topics, including ethnicity, culture, race, and racialization; housing; income; employment; and space and place. Results of this review have the potential to increase awareness of existing trans research, to characterize evidence gaps, and to inform strategic research prioritization. With this information, it is more likely that trans communities and allies will be in a position to benefit from existing research and to hold researchers accountable.

Open Availability of Patient Medical Photographs in Google Images Search Results: Cross-Sectional Study of Transgender Research.

BACKGROUND: This paper focuses on the collision of three factors: a growing emphasis on sharing research through open access publication, an increasing awareness of big data and its potential uses, and an engaged public interested in the privacy and confidentiality of their personal health information. One conceptual space where this collision is brought into sharp relief is with the open availability of patient medical photographs from peer-reviewed journal articles in the search results of online image databases such as Google Images. OBJECTIVE: The aim of this study was to assess the availability of patient medical photographs from published journal articles in Google Images search results and the factors impacting this availability. METHODS: We conducted a cross-sectional study using data from an evidence map of research with transgender, gender non-binary, and other gender diverse (trans) participants. For the original evidence map, a comprehensive search of 15 academic databases was developed in collaboration with a health sciences librarian. Initial search results produced 25,230 references after duplicates were removed. Eligibility criteria were established to include empirical research of any design that included trans participants or their personal information and that was published in English in peer-reviewed journals. We identified all articles published between 2008 and 2015 with medical photographs of trans participants. For each reference, images were individually numbered in order to track the total number of medical photographs. We used odds ratios (OR) to assess the association between availability of the clinical photograph on Google Images and the following factors: whether the article was openly available online (open access, Researchgate.net, or Academia.edu), whether the article included genital images, if the photographs were published in color, and whether the photographs were located on the journal article landing page. RESULTS: We identified 94 articles with medical photographs of trans participants, including a total of 605 photographs. Of the 94 publications, 35 (37%) included at least one medical photograph that was found on Google Images. The ability to locate the article freely online contributes to the availability of at least one image from the article on Google Images (OR 2.99, 95% CI 1.20-7.45). CONCLUSIONS: This is the first study to document the existence of medical photographs from peer-reviewed journals appearing in Google Images search results. Almost all of the images we searched for included sensitive photographs of patient genitals, chests, or breasts. Given that it is unlikely that patients consented to sharing their personal health information in these ways, this constitutes a risk to patient privacy. Based on the impact of current practices, revisions to informed consent policies and guidelines are required.

The interactions of Canadian ethics consultants with health care managers and governing boards during times of crisis.

BACKGROUND: Health care organizations can be very complex, and are often the setting for crisis situations. In recent years, Canadian health care organizations have faced large-scale systemic medical errors, a nation-wide generic injectable drug shortage, iatrogenic infectious disease outbreaks, and myriad other crises. These situations often have an ethical component that ethics consultants may be able to address. Organizational leaders such as health care managers and governing boards have responsibilities to oversee and direct the response to crisis situations. This study investigates the nature and degree of involvement of Canadian ethics consultants in such situations. METHODS: This qualitative study used semi-structured interviews with Canadian ethics consultants to investigate the nature of their interactions with upper-level managers and governing board members in health care organizations, particularly in times of organizational crisis. We used a purposive sampling technique to identify and recruit ethics consultants throughout Canada. RESULTS: We found variability in the interactions between ethics consultants and upper-level managers and governing boards. Some ethics consultants we interviewed did not participate in managing organizational crisis situations. Most ethics consultants reported that they had assisted in the management of some crises and that their participation was usually initiated by managers. Some ethics consultants reported the ability to bring issues to the attention of upper-level managers and indirectly to their governing boards. The interactions between managers and ethics consultants were characterized by varying degrees of collegiality. Ethics consultants reported participating in or chairing working groups, participating in incident management teams, and developing decision-making frameworks. CONCLUSIONS: Canadian ethics consultants tend to believe that they have valuable skills to offer in the management of organizational crisis situations. Most of the ethics consultants we interviewed believed that they play an important role in this regard.

Documenting research with transgender and gender diverse people: protocol for an evidence map and thematic analysis.

BACKGROUND: There is limited information about how transgender, gender diverse, and Two-Spirit (trans) people have been represented and studied by researchers. The objectives of this study are to (1) map and describe trans research in the social sciences, sciences, humanities, health, education, and business, (2) identify evidence gaps and opportunities for more responsible research with trans people, (3) assess the use of text mining for study identification, and (4) increase access to trans research for key stakeholders through the creation of a web-based evidence map. METHODS: Study design was informed by community consultations and pilot searches. Eligibility criteria were established to include all original research of any design, including trans people or their health information, and published in English in peer-reviewed journals. A complex electronic search strategy based on relevant concepts in 15 databases was developed to obtain a broad range of results linked to transgender, gender diverse, and Two-Spirit individuals and communities. Searches conducted in early 2015 resulted in 25,242 references after removal of duplicates. Based on the number of references, resources, and an objective to capture upwards of 90% of the existing literature, this study is a good candidate for text mining using Latent Dirichlet Allocation to improve efficiency of the screening process. The following information will be collected for evidence mapping: study topic, study design, methods and data sources, recruitment strategies, sample size, sample demographics, researcher name and affiliation, country where research was conducted, funding source, and year of publication. DISCUSSION: The proposed research incorporates an extensive search strategy, text mining, and evidence map; it therefore has the potential to build on knowledge in several fields. Review results will increase awareness of existing trans research, identify evidence gaps, and inform strategic research prioritization. Publishing the map online will improve access to research for key stakeholders including community members, policy makers, and healthcare providers. This study will also contribute to knowledge in the area of text mining for study identification by providing an example of how semi-automation performs for screening on title and abstract and on full text.

The use of Ethics Decision-Making Frameworks by Canadian Ethics Consultants: A Qualitative Study.

In this study, Canadian healthcare ethics consultants describe their use of ethics decision-making frameworks. Our research finds that ethics consultants in Canada use multi-purpose ethics decision-making frameworks, as well as targeted frameworks that focus on reaching an ethical resolution to a particular healthcare issue, such as adverse event reporting, or difficult triage scenarios. Several interviewees mention the influence that the accreditation process in Canadian healthcare organizations has on the adoption and use of such frameworks. Some of the ethics consultants we interviewed also report on their reluctance to use these tools. Limited empirical work has been done previously on the use of ethics decision-making frameworks. This study begins to fill this gap in our understanding of the work of healthcare ethics consultants.

Guidelines for Teaching Cross-Cultural Clinical Ethics: Critiquing Ideology and Confronting Power in the Service of a Principles-Based Pedagogy.

This paper presents a pedagogical framework for teaching cross-cultural clinical ethics. The approach, offered at the intersection of anthropology and bioethics, is innovative in that it takes on the "social sciences versus bioethics" debate that has been ongoing in North America for three decades. The argument is made that this debate is flawed on both sides and, moreover, that the application of cross-cultural thinking to clinical ethics requires using the tools of the social sciences (such as the critique of the universality of the Euro-American construct of "autonomy") within (rather than in opposition to) a principles-based framework for clinical ethics. This paper introduces the curriculum and provides guidelines for how to teach cross-cultural clinical ethics. The learning points that are introduced emphasize culture in its relation to power and underscore the importance of viewing both biomedicine and bioethics as culturally constructed.

Models of Ethics Consultation Used by Canadian Ethics Consultants: A Qualitative Study.

This article describes a qualitative study of models of ethics consultation used by ethics consultants in Canada. We found four different models used by Canadian ethics consultants whom we interviewed, and one sub-variant. We describe (1) the lone ethics consultant model, (1a) the hub-and-spokes sub-variant of this model; (2) the ethics committee model; (3) the capacity-building model; and (4) the facilitated model. Previous empirical studies of ethics consultation describe only two or three of these models.

"Other" Troubles: Deconstructing Perceptions and Changing Responses to Refugees in Canada.

Canadian national identity is based on a self-image of humanitarianism and liberality governed by ethical and moral principles of social justice, universal health care and equity for all. However, recent changes to the Interim Federal Health Program (IFHP) demonstrate that the current discourse on refugee policy in Canada is built on a socially constructed image of "the refugee." Drawing on contemporary refugee literature we look at how refugees are constructed as the 'Other,' both nationally and internationally. Using the recent changes to the IFHP as a case example, we demonstrate that the construction of "the refugee" as an Other has informed the cuts to refugee care in Canada. Exposing Othering in Canadian refugee policy is necessary for providing helpful and equitable treatment to refugees in Canada.

Embodying a New Meaning of Being At Risk: Living With an Implantable Cardioverter Defibrillator for Arrhythmogenic Right Ventricular Cardiomyopathy.

Arrhythmogenic Right Ventricular Cardiomyopathy/Dysplasia (ARVC/D) is a genetic condition that can cause fatal arrhythmias. The implantable cardioverter defibrillation (ICD) is a primary treatment for ARVC/D. Using a grounded theory approach, this study examines the experiences of 15 individuals living with an ICD. The ability to cope with and adjust to having an ICD is influenced by the acceptance of the ICD as something needed to survive, an understanding of the ICD's function, existing support networks, and ones' ability to manage everyday challenges. Coping well requires reshaping ideas about the meaning of being at risk and understanding how the ICD fits into that changing personal risk narrative. A thorough understanding of the unique needs of individuals with ARVC/D and of the specific factors contributing to the psychosocial distress related to having an ICD (vs. having the disease itself) is needed. Nurses must be prepared to provide ongoing support and education to this population.

Risk and Representation in Research Ethics: The NunatuKavut Experience.

This article examines Canadian policy governing the ethics of research involving Indigenous communities. Academics and community members collaborated in research to examine how best to apply the Tri-Council Policy Statement guidelines in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We describe the politics of risk--the ways in which collective identity and research risks are co-constructed. Our case study illustrates that collective consent to research must emphasize shifting identity construction in relation to the particular risks and benefits invoked by the research question, to ascertain with which groups or individuals the negotiation of risk should take place in the first place. We conclude by describing a necessary re-imagining of policy governing research ethics involving Indigenous communities.

The MUN Med Gateway Project: marrying medical education and social accountability.

PROBLEM ADDRESSED: Access to a continuum of care from a family physician is an essential component of health and well-being; however, refugees have particular barriers in accessing medical care. OBJECTIVE OF PROGRAM: To provide access to family physicians and continuity of care for newly arrived refugees; to provide opportunities for medical students to practise cross-cultural health care; and to mentor medical students in advocacy for underserved populations. PROGRAM DESCRIPTION: The MUN Med Gateway Project, based at Memorial University of Newfoundland in St John's, is a medical student initiative that partners with the local refugee settlement agency to provide health care for new refugees to the province. Medical students conduct in-depth medical histories, with provision of some basic physical screening, while working through an interpreter with supervision by a family doctor and settlement public health nurse. Each patient or family is matched with a family physician. CONCLUSION: The project's adaptation of student-run clinics, which connects refugees with the existing mainstream medical system, has been an overwhelming success, making it a model for community action as an educational strategy.

"Awakening to" a new meaning of being at-risk for arrhythmogenic right ventricular cardiomyopathy: a grounded theory study.

Efforts of social scientists to understand how individuals living in a family at risk for a genetically linked condition make health care decisions, having brought to the forefront the contextual nature of risk perception. Using a grounded theory approach, this study examines the experiences of 29 individuals living in families at risk for arrhythmogenic right ventricular cardiomyopathy (ARVC). Attention is paid to how individuals (re)construct the meaning of being at risk in relation to the developing science of gene discovery. Findings highlight that individuals living in a family at risk for ARVC juxtapose existing scientific knowledge against experiential knowledge as they "awaken to" the fact that they or a family member are at risk. This process is pragmatic and fluid and contingent upon whether and how symptoms are aligned with the constructed image of the at-risk relative.

Making the decision to participate in predictive genetic testing for arrhythmogenic right ventricular cardiomyopathy.

This paper describes the experience of predictive genetic testing for Arrhythmogenic Right Ventricular Cardiomyopathy in the context of novel gene discovery. Two approaches to making the decision to engage in genetic testing were apparent: the decision to be tested either (a) develops gradually over time or (b) happens so quickly that it is felt as a "fait accompli." Six key factors that influenced the particular approach taken by the participants were identified: (1) scientific process--available and relevant predictive genetic test; (2) numerous losses or deaths within the family; (3) physical signs and symptoms of disease; (4) gender; (5) sense of relational responsibility or moral obligation to other family members; and (6) family support. This study found that at risk individuals juxtapose scientific knowledge against their experiential knowledge and the six identified factors in order to make the decision to participate in genetic testing. Recommendations include the creation of a relational space within which to provide psychological counselling and assessment for the six identified factors that shape the decision to engage in predictive genetic testing.

Ethics, "Vulnerability," and Feminist Participatory Action Research With a Disability Community.

We consider the work of research ethics boards and funding models for research that at times are incompatible with the relationship building required for feminist participatory action research with a disability community. We explore the barriers that emerged for university- and community-based partners as they asserted individual and collective identities, and negotiated boundaries, access, and power relations in the process of designing and conducting research. This critical reflection contributes to our understanding of the structures of academic research funding, ethics approval, and how problematic conceptualizations of vulnerability embedded in the Tri-Council Policy Statement and research ethics board practices impact on relationship building and the research process. Recommendations for change will be helpful to researchers studying disability, those using participatory action research, and individuals serving on ethics review boards.

The evolution of integration: innovations in clinical skills and ethics in first year medicine.

Critical self-reflection, medical ethics and clinical skills are each important components of medical education but are seldom linked in curriculum development. We developed a curriculum that builds on the existing integration of ethics education into the clinical skills course to more explicitly link these three skills. The curriculum builds on the existing integration of clinical skills and ethics in first year medicine. It refines the integration through scheduling changes; adds case studies that emphasise the social, economic and political context of our province's patient population; and introduces reflection on the "culture of medicine" as a way to have students articulate and understand their own values and moral decision making frameworks. This structured Clinical Skills course is a model for successfully integrating critical self-reflection, reflection on the political, economic and cultural contexts shaping health and healthcare, and moral decision making into clinical skills training.

Prenatal genetic counseling in cross-cultural medicine: A framework for family physicians.

OBJECTIVE: To help family physicians practise effective genetic counseling and offer practical strategies for cross-cultural communication in the context of prenatal genetic counseling. SOURCES OF INFORMATION: PubMed and the Cochrane Database of Systematic Reviews were searched. Most evidence was level II and some was level III. MAIN MESSAGE: The values and beliefs of practitioners, no less than those of patients, are shaped by culture. In promoting a patient's best interest, the assumptions of both the patient and the provider must be held up for examination and discussed in the attempt to arrive at a consensus. Through the explicit discussion and formation of trust, the health professionals, patients, and family members who are involved can develop a shared understanding of appropriate therapeutic goals and methods. CONCLUSION: Reflecting on the cultural nature of biomedicine's ideas about risk, disability, and normality helps us to realize that there are many valid interpretations of what is in a patient's best interest. Self-reflection helps to ensure that respectful communication with the specific family and patient is the basis for health care decisions. Overall, this helps to improve the quality of care.