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.

Thoughts on supporting healthcare ethics leadership, by the editors of Impact Ethics.

Impact Ethics (www.impactethics.ca) is a Canadian bioethics blog with a diversity of contributors who come from a range of backgrounds - from academics and clinicians to activists and concerned citizens. Our authors are also diverse with respect ethnicity, race, culture, and gender. We publish commentaries about ethical issues in healthcare that affect Canadians. As editors of the blog and as practicing healthcare ethicists, we make note of three crucial determinants of leadership in healthcare ethics. First, leadership in healthcare ethics requires building relationships with other leaders, including those who do not hold formal leadership roles. Second, it is essential for leaders to be open to learning new knowledge and to learning about new practices in healthcare ethics. Third, leaders must have an orientation towards the future, which means building capacity for healthcare ethics within their organizations. The Impact Ethics blog can be used to support each of these determinants of ethics leadership.

Prospects for limiting access to prenatal genetic information about Down syndrome in light of the expansion of prenatal genomics.

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that when we can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies.

How research ethics boards should monitor clinical research.

The objective of this commentary is to provide a framework and ethical justification for a more proactive model of continual, active monitoring of research. We outline what the increased monitoring should consist of, and the practical constraints associated with executing these monitoring functions. We also defend the idea that adequate post-initial-review monitoring requires greater REB involvement, rather than trust and researcher's assurances.

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.

Clinical ethics issues in HIV care in Canada: an institutional ethnographic study.

BACKGROUND: This is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups. METHODS: We used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical issues in the clinics, and to understand how health care providers and clinic clients manage and resolve these issues. RESULTS: We found that health care providers and clinic clients have developed work processes for managing ethical issues of various types: conflicts between client-autonomy and public health priorities ("treatment as prevention"), difficulties associated with the criminalization of nondisclosure of HIV positive status, challenges with non-adherence to HIV treatment, the protection of confidentiality, barriers to treatment access, and negative social determinants of health and well-being. CONCLUSIONS: Some ethical issues resulted from structural disadvantages experienced by clinic clients. The most striking findings in our study were the negative social determinants of health and well-being experienced by some clinic clients - such as experiences of violence and trauma, poverty, racism, colonization, homelessness, and other factors affecting well-being such as problematic substance use. These negative determinants were at the root of other ethical issues, and are themselves of ethical concern.

The ethical case for providing cost-free access to lifesaving HIV medications in Canada: Implications of a qualitative study.

Antiretroviral therapy for HIV can be expensive if paid for out of pocket. In Canada, there are a variety of federal, provincial, and private prescription drug plans that lower the cost of these lifesaving medications for people living with HIV, and in some cases, these plans result in cost-free access. However, many people living with HIV must contend with high deductibles for their antiretroviral therapies, and many experience difficulty managing the administrative requirements of their drug plans. This article comments on some of the results of a qualitative study into ethical issues in HIV care. Access to antiretrovirals was a theme that emerged in this study. We argue on ethical grounds that provincial drug plans should guarantee cost-free access to antiretroviral therapies for people living with HIV with minimal administrative requirements.

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.

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.

Drugs, money, and power: the Canadian drug shortage.

This article describes the shortage of generic injectable medications in Canada that affected hospitals in 2012. It traces the events leading up to the drug shortage, the causes of the shortage, and the responses by health administrators, pharmacists, and ethicists. The article argues that generic drug shortages are an ethical problem because health care organizations and governments have an obligation to avoid exposing patients to resource scarcity. The article also discusses some options governments could pursue in order to secure the drug supply and thereby fulfill their ethical obligations.

Taking bioethics personally.

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives.

A disability critique of the new prenatal test for Down syndrome.

This article presents evidence that the availability of a new noninvasive test for Down syndrome (known as "MaterniT21") could result in increased uptake of prenatal testing for Down syndrome and an increase in selective abortions of affected fetuses. I argue that people with Down syndrome and those sympathetic to them have reason to object to these developments because bias against cognitive disability is an influence on decisions to test and terminate for Down syndrome, and social practices motivated by bias are objectionable. The article addresses many of the challenges to the disability critique formulated by its detractors. I discuss whether the disability critique is the same as the "expressivist" objection to prenatal testing, the nature of the harm experienced by people with Down syndrome, and the link between prenatal testing and this harm.

Overcoming liability concerns in vaccine trials involving pregnant women.

Without the protection of vaccines, the health of pregnant women may be compromised. But assessing the safety and efficacy of vaccines in pregnancy requires research in pregnancy. Furthermore, vaccinating women while they are pregnant may convey immunity to the fetus in utero, but assessing this possible benefit of maternal immunization also requires research. This article argues that one factor inhibiting vaccine research involving pregnant women is that vaccine manufacturers fear incurring liability if they fund such research. We argue that vaccine research in pregnancy can be ethical, and we explore some methods for overcoming vaccine manufacturers' fear of liability.

Two stalemates in the philosophical debate about abortion and why they cannot be resolved using analogical arguments.

Philosophical debate about the ethics of abortion has reached stalemate on two key issues. First, the claim that foetuses have moral standing that entitles them to protections for their lives has been neither convincingly established nor refuted. Second, the question of a pregnant woman's obligation to allow the gestating foetus the use of her body has not been resolved. Both issues are deadlocked because philosophers addressing them invariably rely on intuitions and analogies, and such arguments have weaknesses that make them unfit for resolving the abortion issue. Analogical arguments work by building a kind of consensus, and such a consensus is virtually unimaginable because (1) intuitions are revisable, and in the abortion debate there is great motive to revise them, (2) one's position on abortion influences judgments about other issues, making it difficult to leverage intuitions about other ethical questions into changing peoples' minds about abortion, and (3) the extent of shared values in the abortion debate is overstated. Arguments by analogy rely on an assumption of the commensurability of moral worldviews. But the abortion debate is currently unfolding in a context of genuinely incommensurable moral worldviews. The article ends by arguing that the default position must be to permit abortion as a consequence of the freedom of conscience protected in liberal societies.

The influence of the stigma of obesity on H1N1 influenza vaccine sequencing in Canada in 2009.

In 2009, the Public Health Agency of Canada (PHAC) provided guidelines about which groups should be given first access to the H1N1 influenza vaccine. These guidelines recommended that people under 65 with chronic health conditions should be among the first groups to receive the H1N1 influenza vaccine. Severe obesity was among the relevant chronic health conditions identified by PHAC. Since health care is under the jurisdiction of the ten Canadian provinces, the provinces were not required to follow these recommendations in their respective mass vaccination campaigns. Only one province (Manitoba) followed the PHAC recommendations with respect to severe obesity. Four provinces did not offer early vaccination to this group. Other provinces listed severe obesity as a sequencing category late in the vaccination campaign or placed narrow age restrictions on those who were given early access. This commentary argues that the Canadian provinces demonstrated an ambiguous commitment to the early vaccination of people who were severely obese, and that there is evidence that the stigma of obesity influenced H1N1 influenza vaccine sequencing decisions in many Canadian provinces.