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Ethical Issues in Community and Patient Stakeholder–Engaged Health Research

• © 2023
• Emily E. Anderson   ORCID: https://orcid.org/0000-0003-2197-1239 0

Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago, Maywood, USA

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• First book to cover the full range of ethical issues related to a variety of different forms of stakeholder engagement
• Contains case studies highlighting unique issues that arise in stakeholder engagement relevant to different populations
• Synthesizes current conversations, best practices, and future directions in stakeholder–engaged health research

Part of the book series: Philosophy and Medicine (PHME, volume 146)

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About this book

This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.

• Community-engaged Research
• history of codes of ethics
• epistemology and stakeholder engagement
• the Belmont principle
• CIOMS Ethical guidelines
• philosophy of patient engagement
• promoting equitable collaboration
• stakeholder voices in healthcare
• human research protections

Table of contents (20 chapters)

Front matter, introduction: what we talk about when we talk about the ethics of engaging patient and community stakeholders in health research.

Emily E. Anderson

Theorizing Participatory Research

• Andrew Evans, Angela Potochnik

An Evolving Ethical Framework for Patient and Community-Engaged Research

• Lisa Mikesell

Beyond Good Intentions: Principles for Anti-racist Community-Engaged Research

• Alexis Grant, Andrea L. DaViera

Demystifying How Academic-Community Partnerships Use Reflexivity and Praxis to Promote Participatory Research Principles of Equity and Justice

• Jeni Hebert-Beirne, Sylvia Gonzalez, Melissa Chrusfield, Adlaide Holloway, Jennifer Plascencia Lopez, Dolores Castañeda

Reflexivity: A Strategy for Ethics- and Values-Driven Community Partnerships in Mental Health

• Tommy Chou, Stacy L. Frazier

In the Field

How do you define community and why is it important.

• Laurene Tumiel-Berhalter, Linda Kahn

Community Researchers and Ethical Considerations: Burdens in the Field

• Maghboeba Mosavel, Briona Phillips

Community-Engaged Research with People with Developmental Disabilities: A Conversation with Community Researchers about their Ethical Inclusion

• Brendan Durkin, Micah Fialka-Feldman, Jacob Myers, Ariel Schwartz, Katherine McDonald

Community Conversations about Culturally Responsive Health Research for African American Communities

• Adina Black, Millicent Robinson, Paige Castro-Reyes, Al Richmond, Latajah Lassus, Nancy Shore

The Power of Personal Narrative: My Experience with SACHRP, the FDA, and Bioethics

• Gianna McMillan

Unique Ethical Considerations

Patient advocacy organizations and conflicts of interest in research.

• Lisa Parker, Barbara Mintzes

Representing and Protecting: Gatekeepers in Community-Engaged Research

• Ryan Spellecy

Paying Research Participants and Community and Patient Research Partners: An Engaging Ethical Issue

• Lisa Ballance, Elizabeth Ripley

Rethinking Risks and Benefits in Stakeholder-Engaged Research: Lessons from HIV, Substance Use, and Sexual Health Research with Marginalized Communities

• Adrian Guta, Peter A. Newman, Adam Bourne

Data Decisions and Ethics: The Case of Stakeholder-Engaged Research

• Melody S. Goodman, Kristyn A. Pierce, James M. DuBois, Vetta Sanders Thompson

Editors and Affiliations

About the editor.

Emily E. Anderson, PhD, MPH, is Professor in the Neiswanger Institute for Bioethics and Healthcare Leadership at Loyola University Chicago’s Stritch School of Medicine. Dr. Anderson holds a PhD in health care ethics from Saint Louis University and an MPH from University of Illinois Chicago. She teaches courses on research ethics and responsible conduct of research to bioethics and biomedical sciences graduate students as well as medical students. In addition to the ethics of stakeholder engagement in research, her areas of interest and expertise include researcher and physician professionalism and misconduct; ethical issues in research with vulnerable populations; informed consent; institutional review board (IRB) policy; and the application of qualitative research techniques to the study of research ethics. She has published over 50 articles in top journals including the  American Journal of Bioethics, Journal of Law, Medicine, and Ethics, Academic Medicine,  and  IRB: Ethics & Human Research.  Dr. Anderson currently serves as associate editor of  Narrative Inquiry in Bioethics . Dr. Anderson has been a co-investigator on several federally-funded research and educational projects and recently co-authored the book  100 Questions and Answers about Research Ethics  (Sage Publications, 2018) with Dr. Amy Corneli (at Duke University).

Bibliographic Information

Book Title : Ethical Issues in Community and Patient Stakeholder–Engaged Health Research

Editors : Emily E. Anderson

Series Title : Philosophy and Medicine

DOI : https://doi.org/10.1007/978-3-031-40379-8

Publisher : Springer Cham

eBook Packages : Religion and Philosophy , Philosophy and Religion (R0)

Copyright Information : The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023

Hardcover ISBN : 978-3-031-40378-1 Published: 02 October 2023

Softcover ISBN : 978-3-031-40381-1 Due: 31 October 2023

eBook ISBN : 978-3-031-40379-8 Published: 29 September 2023

Series ISSN : 0376-7418

Series E-ISSN : 2215-0080

Edition Number : 1

Number of Pages : XVI, 327

Number of Illustrations : 1 b/w illustrations

Topics : Ethics , Medicine/Public Health, general , Public Health , Community and Environmental Psychology

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Open Access

Peer-reviewed

Research Article

Ethical guidance for conducting health research with online communities: A scoping review of existing guidance

Roles Conceptualization, Data curation, Formal analysis, Methodology, Project administration, Validation, Visualization, Writing – original draft, Writing – review & editing

Affiliation Public Health Institute, Liverpool John Moores University, Liverpool, United Kingdom

Roles Conceptualization, Data curation, Formal analysis, Methodology, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Roles Data curation, Formal analysis, Methodology, Writing – original draft, Writing – review & editing

• Jane Harris, 
• Jennifer Germain, 
• Ellie McCoy, 
• Rosemary Schofield

• Published: May 17, 2024
• https://doi.org/10.1371/journal.pone.0302924
• Reader Comments

Online research methods have grown in popularity due in part to the globalised and far-reaching nature of the internet but also linked to the Covid-19 pandemic whereby restrictions to travel and face to face contact necessitated a shift in methods of research recruitment and data collection. Ethical guidance exists to support researchers in conducting online research, however this is lacking within health fields. This scoping review aims to synthesise formal ethical guidance for applying online methods within health research as well as provide examples of where guidance has been used. A systematic search of literature was conducted, restricted to English language records between 2013 and 2022. Eligibility focused on whether the records were providing ethical guidance or recommendations, were situated or relevant to health disciplines, and involved the use or discussion of online research methods. Following exclusion of ineligible records and duplicate removal, three organisational ethical guidance and 24 research papers were charted and thematically analysed. Four key themes were identified within the guidance documents, 1) consent, 2) confidentiality and privacy, 3) protecting participants from harm and 4) protecting researchers from harm with the research papers describing additional context and understanding around these issues. The review identified that there are currently no specific guidelines aimed at health researchers, with the most cited guidance coming from broader methodological perspectives and disciplines or auxiliary fields. All guidance discussed each of the four key themes within the wider context of sensitive topics and vulnerable populations, areas and issues which are often prominent within health research thus highlighting the need for unifying guidance specific for health researchers. Further research should aim to understand better how online health studies apply ethical principles, to support in informing gaps across both research and guidance.

Citation: Harris J, Germain J, McCoy E, Schofield R (2024) Ethical guidance for conducting health research with online communities: A scoping review of existing guidance. PLoS ONE 19(5): e0302924. https://doi.org/10.1371/journal.pone.0302924

Editor: Ayush Anand, BP Koirala Institute of Health Sciences, NEPAL

Received: September 5, 2023; Accepted: April 15, 2024; Published: May 17, 2024

Copyright: © 2024 Harris et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the manuscript and its Supporting Information files.

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Globally, there are 5.3 billion and 4.95 billion users of the internet and social media respectively [ 1 ], with these online spaces creating unprecedented research opportunities, particularly within health research and leading the internet to be coined ‘the laboratory for the social sciences’ [ 2 , 3 ]. Online methods are frequently used in health research to engage with populations who are hard to reach or seldom heard outside of online spaces, as well as those who are engaging in illicit or risky behaviours [ 4 ]. More recently, the Covid-19 pandemic restrictions necessitated a shift in methods of data collection and heightened interest in online methods [ 5 , 6 ]. Online research methods can range from recruiting participants online, e.g., advertising surveys online, through to online communities and social media becoming sources of data through data capture or scraping. It is this latter category where data is ‘taken’ from existing online spaces which often poses the most ethical questions, challenges and blurring of boundaries for researchers [ 7 ] who are working in spaces which are changing and adapting all the time as technology advances.

Ethical guidance exists to support researchers conducting online research and comes from both discipline specific fields such as psychology [ 8 ] and sociology [ 9 , 10 ], as well as more general guidance from cross disciplinary organisations [ 11 ]. This guidance applies offline ethical considerations to online methods, considering issues regarding consent, confidentiality and anonymity as well as protecting both participants and researchers from harm. Whilst these are standard ethical principles, their application can differ in online spaces and guidelines can often be interpreted differently or overlooked entirely within research and by researchers [ 12 ]. Furthermore, the study of online communities can present new ethical considerations such as whether these spaces can be considered public or private, a distinction which is difficult to navigate within the context of online platforms and where views are inconsistent even by those who inhabit such spaces [ 13 ]. Whilst online research has been used extensively within social sciences and particularly within health research, no guidance exists which is aimed specifically at health researchers. This coupled with complex ethical issues within an ever-changing online landscape can make conducting this research challenging. Therefore, this scoping review aims to synthesise current best ethical practice and guidance for online research and specifically for health researchers, consider the application of these sets of guidance within health research.

Due to a paucity in guidance specifically aimed at health researchers, this scoping review aimed to synthesise existing formal online ethical guidance within health research. Arksey and O’Malley’s [ 14 ] five-stage iterative process for scoping reviews was followed throughout, comprising the following 5 stages: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data and (5) collating, summarizing and reporting the results.

Research question

The review aimed to understand what ethical guidance is available for researchers conducting online research. The underpinning research question was ‘what guidance exists on the ethical considerations that should be taken by health researchers conducting research with or about online health communities’ which guided the systematic search strategy. The overarching review question allowed the reviewers to search a wide range of available literature to capture what guidance is already available in the public domain and collate and review recommendations developed from other studies.

Aims and objectives

Specifically, this study aimed to:

• Map the available guidance on online ethics that is of relevance to health researchers
• Thematically describe the key ethical considerations covered by this guidance (e.g., consent, protection from harm, preventing identification, verbatim quotes)
• Highlight any areas of disagreement across the guidance
• Identify any gaps or ethical grey areas in current guidance.

Identifying relevant studies

The search strategy was developed using search terms based on the PCC framework [ 15 , 16 ]; population of interest (health researchers), the concept (ethical guidance and considerations) and context (research with online health communities). JH and JG led the development of the search strategy and search terms focused on 1) online 2) research 3) ethics and 4) policy and guidance. Searches were conducted across Scopus, Web of Science, Medline and Psycinfo to locate publications over a 10-year timeframe between 2013 and 2022. A ten year timeframe was chosen due to rapidly evolving trends across social media and technology, with this time frame best reflecting the current online platform landscape. Manual searching of reference lists was undertaken and grey literature searched using Google Scholar, Google and websites of key health related research bodies and regulators (e.g., NIHR, BPS, Royal College of Physicians).

Searches identified 3,294 records which were imported into Rayan online reference manager and duplicates removed (n = 1,177). Study selection utilised a two-step process to screen titles and abstracts (n = 2,117) and then full paper screening (n = 189). All screening was undertaken by JH, JG, EMC and RS and following inclusion and exclusion criteria set out in Table 1 . Two reviewers each blind screened papers at both screening stages with conflicts resolved by group discussion and a third review where necessary. Research papers were selected for the review if they were conducting one of the forms of online research outlined in Table 1 in a health-related field and if their article made recommendations or guidance of their own for ethical practice as a result of their research experiences. Grey literature followed the same two-step process for screening. Twenty-seven articles and guidance were selected for data charting. All searches were conducted between February and June 2022, and were repeated in August 2023 however no new guidance was identified in these latter searches.

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https://doi.org/10.1371/journal.pone.0302924.t001

Risk of bias

Whilst quality assessment is not a requirement of scoping reviews, assessing the methodological and other qualities of studies can support in contextualising findings and enable interpretation [ 15 ]. Therefore, the selected articles were assessed for quality and bias using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Text and Opinion [ 17 ]. The Text and Opinion checklist was considered most suitable as the scoping review had identified a range of different publications which made recommendations on ethical practice in online health research including organisational guidance documents, commentary and opinion pieces and methodological papers. As presented in Table 2 , the checklist criteria focused on whether the ethical recommendations made were clearly identified and logical, had standing in their field of expertise, were relevant to health researchers and had congruence with existing research. The quality of the papers and guidance was independently assessed by one of the four reviewers (JH, JG, EMC, RS) using the predetermined questions. The quality assessment of the papers can be viewed in Table 2 . The review papers largely met the criteria and after discussion, the decision was made to include all 27 papers in the final review.

https://doi.org/10.1371/journal.pone.0302924.t002

Data collection, summarisation and presentation of results

A data extraction form was developed in a Microsoft Excel Spreadsheet charting all relevant data including authors, year of publication, key ethical topics covered and, for research papers, which if any ethical organisational guidance had been followed. The data form was piloted independently by two authors (JH/JG) on 10% (n = 3) of papers, and the remainder of included studies split between the two reviewers. Data was charted across four key areas 1) consent , 2) confidentiality and privacy , 3) protecting participants from harm and 4) protecting researchers from harm . The areas where initially informed by the key subheading across all included ethical guidance and refined through discussions involving all members of the team. All data was systematically extracted and charting was conducted by two researchers (JH and JG) and checked for consistency. The researchers then made comparisons across the selected papers to identify common themes and gaps across the existing guidance. Once data extraction was complete, JH and JG discussed the findings to identify the key points of ethical consideration within each theme which were then synthesised to create a narrative account of the guidance.

Guidance from three organisations met the inclusion criteria for the review (See Fig 1 for PRISMA flow diagram): the British Psychological Society (BPS) [ 8 ], the Association of Internet Research (AoIR) [ 11 ] and the British Sociological Association (BSA) [ 9 , 10 ].

https://doi.org/10.1371/journal.pone.0302924.g001

Summaries of the guidance are included in Table 3 and our narrative is presented around four key themes: consent, confidentiality and privacy, protecting participants from harm and protecting researchers from harm ( Fig 2 ). Alongside these guidance documents, 24 research papers ( Table 4 ) were included to give a clearer understanding of which (if any) ethical guidance health researchers were following. The AoIR [ 11 ] was the most commonly cited guidance (n = 18), followed by the BPS [ 8 ] (n = 7), with the BSA [ 9 ] least cited (n = 1). Six papers did not cite any of the guidance documents, however, most papers were following the key guidance principles.

https://doi.org/10.1371/journal.pone.0302924.g002

https://doi.org/10.1371/journal.pone.0302924.t003

https://doi.org/10.1371/journal.pone.0302924.t004

All guidance discussed the complexities of obtaining informed participant consent in online research with BSA [ 9 ] and AOIR [ 11 ] noting particular difficulties for big data studies due to the sheer number of participants involved. According to the BSA, whilst informed consent is not legally required to obtain data from public online spaces, it cannot be overlooked from an ethical perspective [ 9 , 10 ], particularly when topics are sensitive in nature [ 10 ]. The BPS [ 8 ] assert that if data is not considered in the public domain and there is no scientific justification for undisclosed use, consent should always be gained. The AOIR [ 11 ] state that consent should consider environmental factors and expectations of the online communities and users under investigation. A number of practical difficulties were noted in obtaining consent including users having left online spaces and the potential disruption to online communities [ 10 ]. The BPS [ 8 ] outline the need to verify participant characteristics including vulnerability to coercion and ensure consent processes are not overly complicated and lengthy. BSA [ 9 ] advocate for a participatory approach of ongoing communication and recommend researchers consult forum moderators for permission (although they acknowledge moderators may not speak for all users) [ 10 ].

The majority of papers (n = 13) concurred that consent was more ambiguous in public online spaces [ 8 , 11 ] and was an ongoing process requiring continual reflection and communication with participants [ 4 , 18 , 19 , 23 , 25 , 27 , 30 , 32 , 33 , 35 , 36 , 38 – 40 ]. Eight papers repeated the BPS assertion that not seeking consent for public domain online data could be justified when the scientific and social value outweighed the associated risk [ 18 , 19 , 23 , 30 , 33 , 36 , 38 , 40 ]. Examples included data on non-sensitive health topics taken from large publicly accessible forums (for example Mumsnet) and blog or vlog data produced for a public audience [ 25 , 27 , 33 ]. Two studies [ 21 , 22 ] took a more extreme view that all online spaces are private, and consent should always be sought. However, in these instances both were discussing recruiting participants from online spaces to take part in conventional research.

In line with AoIR, seven papers gave attention to the expectations of online communities in relation to research [ 19 , 25 , 30 , 33 , 36 , 39 , 40 ]. For example, Burles et al [ 25 ] suggested that disrupting online illness support communities could cause members to change or reduce the support they provide to others. Three papers agreed with the BSA that consent should be sought from community moderators [ 40 ] using the examples of a private fathering forum [ 33 ], an online youth counselling platform [ 36 ] and closed Facebook groups [ 33 , 39 ]. However, seven papers acknowledged challenges of verifying age characteristics online [ 26 , 28 , 29 , 32 , 34 – 36 ] and the ability to give or capture informed consent online [ 36 ], and recommended consent processes relative to topic sensitivity [ 35 ] developed in consultation with clinical and subject experts [ 36 ]. Five papers acknowledged the challenges of ensuring participant information was read by participants [ 27 – 29 , 32 , 36 ] with solutions including FAQs [ 28 ], online quizzes [ 28 , 29 ] and multi-stage consent forms [ 32 ]. The scale of online datasets was also viewed as a barrier to seeking individual level consent [ 8 , 9 , 11 ]. Solutions proposed included seeking consent for quotes used in publications [ 11 , 27 ], as well as the posting of debriefing messages on the online communities or a dedicated study site [ 27 , 36 , 40 ]. Finally, three papers discussed the challenges of withdrawing consent in online research, for example when data included in a study is deleted by the user [ 4 , 36 ] or in prospective studies when the sensitive data has not yet been produced, with Clark et al [ 27 ] giving the example of using Twitter posts to predict post-natal depression.

Confidentiality/Privacy/Anonymity

As the guidance on consent indicates, all three guidance documents acknowledge that privacy is challenging to define in online spaces [ 8 , 9 , 11 ]. The BPS generally defines a public space as one where participants could reasonably be expected to be observed by strangers [ 8 ]. However, their internet mediated research guidance acknowledges this distinction is not so clear cut for online research because online interaction can simultaneously take place publicly (for example a public online forum) and privately (from the home) [ 8 ]. Where this ambiguity exists the BPS [ 8 ] and BSA [ 9 ] propose several practical steps to ensure participants are sufficiently protected from harm which are discussed in the section below. As the only international guidance included, the AoIR [ 11 ] gives a wider contextual outlook at differing perspectives between disciplines and across countries. They highlight the difference between deontological approaches to privacy (protecting the rights of autonomous individuals) in Europe versus the more utilitarian approaches (achieving a greater good for society) taken in the UK and US and advocate for “ ethical pluralism” which acknowledges these legitimate differences but develops shared norms and practices. The AoIR highlights several contextual factors which must be considered alongside the practical steps outlined by the BPS [ 8 ] and BSA [ 9 ]. This includes legal frameworks (e.g., GDPR), platform terms and conditions, management of data, adequate anonymisation of large data sets and reliance on companies giving access to their API which can favour certain countries, universities and researchers.

Twelve papers reflected on the blurred lines between public and private spaces online and users varying expectations of privacy in relation to research [ 4 , 21 , 23 – 27 , 29 – 33 , 36 ]. For example DeCamp [ 29 ] made recommendations which aligned well with the guidance, stating: 1) researchers should understand site Terms and Conditions regarding privacy and research participation, 2) if a site requires registration and moderator approval, there is some expectation of privacy, and 3) sites with express purpose of sharing individual health stories might have some expectation of privacy and researchers should engage with moderators and users before beginning the research. Two papers recommend the publication of a privacy statement via study or research group specific websites [ 18 , 32 , 35 ]. The issues highlighted by the AoIR in relation to different legal and cultural understandings of privacy internationally were rarely discussed, with only three papers providing any reflection on this [ 26 – 28 ].

Participant harm

The BSA [ 9 ] and BPS [ 8 ] both argue that online research should maximise benefits and minimise harm through values of protection, respect, dignity, and privacy [ 9 ] and gaining informed consent and anonymisation are vital to this. The BPS highlight social responsibility to respect the social structures of existing online groups and the consequences of undertaking research upon group cohesion and trust. Several practical steps are recommended to address this. These include: familiarisation with the online space of study to ascertain if participants perceive it to be public [ 9 ], discussions with group moderators on the best way to research their online groups [ 8 , 9 ], anonymisation of data through removal of personal information [ 8 , 9 ] including online pseudonyms [ 8 ], not including potentially embarrassing or sensitive information [ 9 ], paraphrasing or combining quotes [ 8 , 9 ], age verification and not naming online communities [ 8 ]. The guidance also note that these actions should be proportional to the risk of harm, for example sensitive topics and more vulnerable groups including children and young people, women, certain emotional states such as grieving and/or trauma, illnesses; and minorities such LGBTQ+ communities [ 8 , 11 ]. Research on sensitive topics where risks are high and the ability to control is low should be avoided and consideration must be given to researchers’ responsibility in reporting online users discussing negative well-being and criminal activity [ 8 ].

Sixteen of the studies recommended the anonymisation of data [ 4 , 19 , 23 – 28 , 30 – 33 , 35 – 37 , 40 ], achieved through removing online pseudonyms, sensitive health information, geolocation data and the names of sites from which data was collected. Benton et al [ 23 ] advise caution when linking data across multiple platforms as individual online personas could “out” sensitive health information. Ten studies recommended paraphrasing verbatim quotes [ 4 , 18 , 23 – 26 , 30 , 33 , 35 ], and this varied from changing minor words to prevent retrieval form a search engine, through to the fabrication of synthetic quotes based on participants’ words [ 23 , 25 ]. Eighteen papers felt potential harm was dependent on the sensitivity and anonymity of each online group and that vulnerability should be sensitively negotiated as the research progresses [ 4 , 18 , 19 , 21 – 24 , 26 – 32 , 34 – 36 ]. Three papers suggest this is addressed through familiarisation with site netiquette and potential impacts on cohesion and trust [ 29 , 31 , 33 ].

Researcher harm

Two of the three guidance discussed protecting researchers from harm [ 9 , 11 ]. This was considered particularly important for research relating to politically sensitive topics or where researchers hold identities (e.g., ethnicity, minority identity, sexual identity, political activism, etc.) that could trigger strong ideological reactions [ 11 ], placing them in publicly visible, vulnerable positions and at risk of abuse [ 9 ]. Both guidelines called for the support from individual institutions, stating that researchers should receive ethical approval prior to commencing research and continue to discuss challenges with the committee throughout [ 9 ]. Furthermore, institutions should develop policy detailing support procedures for researchers experiencing online threats or harassment related to their work [ 11 ]. The BPS [ 8 ] also highlight the challenges of ensuring integrity and scientific value when researchers have less control over who can participate, environmental conditions and responses during the research and variations in the research procedures caused by different hardware and software.

Seven papers considered the potential researcher harms from online research. Two papers noted that researchers should be cautious of putting themselves at risk of online abuse particularly if they were from groups vulnerable to harm [ 18 , 24 ]. Hunter et al [ 4 ], in line with AoIR [ 11 ], discuss the emotional impacts of exposure to sensitive or politically extreme information online, recommending clearly defined researcher roles and regular debriefs when exposed to content. Five papers reflect on the impacts upon research integrity raised by the BPS [ 8 , 26 , 30 , 33 , 36 ] with three papers suggesting that seeking approval from institutional research ethics committees is the best way to ensure methodologically and ethically sound research [ 30 , 33 , 36 ].

Our scoping review identified three online ethical guidance documents published within the last ten years which were relevant to researchers working across health-related disciplines: the Association of Internet Researchers (AoIR) [ 11 ], the British Psychological Society (BPS) [ 8 ], and the British Sociological Association (BSA) [ 9 ]. Whilst our review identified common thematic components across this guidance, it is also important to acknowledge that these guidance documents differ in scope and intention. The AoIR guidance promotes ethical pluralism, by highlighting key principles which are relevant to multidisciplinary researchers globally. In contrast, the BPS and BSA are country and discipline specific, presenting structured guidance on research practices. Our review identified a notable gap in formal guidance produced by international and national health organisations. As a result, a number of papers were identified which aimed to give advice to health researchers on conducting ethical online research and these papers drew on a combination of the existing guidance from other disciplines and research experience. Seventeen of the selected papers cited at least one of the three guidance documents, highlighting a clear will among health researchers to make use of guidance when designing their research. However, this also highlights a lack of standardisation of ethical approaches in health research with papers citing different or multiple ethical guidelines including those published prior to the last decade or from wider, less relevant disciplines such as marketing or education. This lack of uniform guidance for health research makes it challenging for researchers seeking to design online studies and for ethical review committees seeking to make consistent decisions about how such research should be conducted [ 41 – 44 ]. Previous reviews have also noted the variation in practices across social media research specifically and called for concrete guidelines on research ethics for social media research to be made available [ 45 ]. However, it should be noted that there has been an argument against a “one size fits all” approach to online research due to the diversity in online cultures, values, and platforms [ 46 ]. Whilst these complexities should not deter researchers from conducting online research they often instead require an individual assessment of the potential ethical issues [ 47 ]. However, the reflexive approach taken to online ethics by the BPS [ 8 ], BSA [ 9 ] and AoIR [ 11 ] (termed “ethical pluralism” by the AoIR [ 11 ]) and commonality in key themes, suggests that it is possible to develop research guidance which covers varying health research aims and approaches.

Broadly, the guidance documents covered four common thematic areas and recommended 1) decisions about seeking consent to use publicly available online data should balance the scientific value to the research with environmental factors relating to the online community including sensitivity of the research topic, vulnerability of populations and the potential for community disruption 2) there is ambiguity around which online spaces are public and private which can vary according to individual, online community, cultural and legal perceptions 3) researchers must therefore take active steps to protect participants from harm relative to the perceived risk, for example through anonymisation of data, and 4) researchers must also protect themselves from individual and reputational harm by seeking the correct ethical approvals for their research. Overall, there was good coverage of these principles within the selected papers with the principles of anonymity (n = 16) and perceptions of privacy (n = 12) most frequently included. Issues of consent (n = 7) and potential researcher harm (n = 7) were considered less often.

Notably across these themes, the guidance documents recommended decisions were made relative to the sensitivity of the research topic and vulnerability of the population under study. Examples of sensitive research areas included mental health [ 8 ], experiences of personal illness [ 9 ] and grief and trauma [ 11 ]. Vulnerable populations included women, children and young people, people in certain emotional states and LGBTQ+ people [ 8 , 11 ]. From our reading of this guidance, it was clear to us that a significant proportion of research undertaken in health-related disciplines could be considered sensitive by this definition as they involve the sharing of personal health experiences [ 48 ] or data, cover sensitive topics (such as mental health, chronic conditions, or substance use) and aim to include or target vulnerable populations [ 49 ]. This suggest that health researchers will be required to consider many of the more complex issues within the guidance as well as ethical safeguards around such issues as potential confidentiality breaches, the collection of sensitive data, or the unauthorised reuse of it [ 50 ]. Health research has a long- and well-established tradition of ethical guidance. In many countries, research taking place on healthcare premises or with patients is reviewed by separate institutional boards within healthcare organisations and there are many standardised expectations and procedures which govern how health related research can take place. For example, in the UK approval for research with National Health Service (NHS) patients must be granted by an NHS ethical committee and then individual approval provided by each hospital or healthcare trust where research will take place. Given the rigorous ethical requirements for health-related research in many countries, it is therefore quite surprising that guidance for online health research has not been produced by any official health organisations. This guidance would be valuable in assisting health researchers to reflexively design their studies to meet the ethical requirements in both health-related disciplines and the wider online research community.

Limitations

This scoping review only included studies which were of relevance to health-related researchers. Given the lack of guidance from health organisations, this may have excluded some broader ethics documents which are being used by health researchers to inform their studies. We limited our scoping review to guidance and papers published in the past 10 years to reflect the fast-changing nature of online communities and online research methodologies. It is possible this may have excluded some earlier guidance in health-related fields, although if these documents have not been updated then their relevance to current health related researchers may be limited. Our review also identified some emerging issues which were beyond the scope of this paper including the ethics of digital images [ 11 ] and the ethical impacts of big data in health, particularly prospective studies which predict sensitive health issues such as mental health or chronic conditions [ 27 , 51 ] which warrant further research. Similarly, we only included papers which presented some form of recommendation or guidance to other researchers on ethical online research practices. Further research could consider online health studies more generally to understand which key ethical principles are being applied, although the early stage of our review suggests that reporting of ethical practices in online research studies is inconsistent.

This scoping review aimed to synthesise current best ethical practice for online research in health -related fields. The review identified that there are currently no specific guidelines aimed at health researchers, with the most cited guidance coming from broader methodological perspectives (Franzke et al, 2020) or auxiliary fields [ 8 , 9 ]. As a consequence, many researchers had attempted to synthesise the recommendations from this guidance, their own research and previous studies to produce their own recommendations on ethical practice. Our review identified four key principles of ethical practice which were well cited in the online health research literature 1) a reflexive approach to seeking informed consent 2) protecting the privacy and anonymity of online participants 3) protecting participants from any harm associated with analysing their online data 4) preventing researchers from harm whilst undertaking online research. Across all the existing guidance, ethical decision making was framed in relation to the sensitivity of the research topic and vulnerability of the population. Given that much health research focuses on sensitive topics and populations, our review recommends unifying guidance specific for health researchers to help them design reflexive and ethical online research. Next steps should be focused on developing tailored health research guideline which draws on the experiences of health researchers working in this domain, as well as providing particular consideration to research across sensitive topics and with vulnerable groups.

Supporting information

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• Published: 26 June 2005

Top 10 health care ethics challenges facing the public: views of Toronto bioethicists

• Jonathan M Breslin 1 ,
• Susan K MacRae 1 ,
• Jennifer Bell 1 ,
• Peter A Singer 1 , 2 &

the University of Toronto Joint Centre for Bioethics Clinical Ethics Group

BMC Medical Ethics volume  6 , Article number:  5 ( 2005 ) Cite this article

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There are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds.

The top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill.

Although many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge.

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It is not uncommon for health care professionals to clash with the family of the patients for whom they care over treatment decisions. Some patients will inevitably suffer the consequences of an error made during their care or hospitalization. Many people in need of diagnostic tests or surgical procedures are forced to wait months, and perhaps even years, to receive these services. These are just some examples of the kinds of ethical challenges that patients and their families may confront in the health care setting.

Although these challenges have been discussed widely in the literature as isolated ethical issues in health care, no attempt has ever been made to collate and prioritize them. Ranking the top ethical challenges facing the public can be an effective and valuable way of bringing them to the public's attention. Moreover, efforts to address ethical challenges in health care vary significantly from one to another, with some receiving a great deal of attention from the media and from government, while others go largely unnoticed; it would be valuable to discover whether the attention given to these challenges is allocated appropriately. Therefore, the purpose of this study was to identify the top ethical challenges facing patients and families in health care, from the perspective of a panel of clinical bioethicsts.

How the study was conducted

A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint Centre for Bioethics. The justification for using a panel of bioethicists rather than a panel of community members is that clinical bioethicists will have a greater familiarity with the overall range of challenges than community members due to the fact that the ethical challenges are highly concentrated in their day-to-day work.

These clinical bioethicists work in a wide range of health care institutions, including quaternary-level institutions (for both adult and pediatric care), geriatrics/long-term care, rehabilitation, addiction and mental health, and community hospitals. In addition, the experience of the panel members covers both inpatient and outpatient health care. The Clinical Ethics Group at the Joint Centre for Bioethics is the largest institutionally-affiliated collection of clinical bioethicists in Canada, and perhaps in the world. Most of the panel members have several years of experience in clinical ethics, and the Clinical Ethics Group as a whole conduct more than 1200 consults per year. We believe that due to their extensive experience in ethics consultation and bioethics research, this group would be able to offer a uniquely informed perspective on the ethical challenges facing patients and their families. The twelve panel members chosen for the study represent a subset of the larger Clinical Ethics Group; although other members of the Clinical Ethics Group participated in various steps of the process, only the results of the twelve panel members who participated in all rounds were included in the results.

In the first round of the process the bioethicists were provided with a list of 38 themes that summarized the themes discussed during the previous two years of case conference discussions at the Joint Centre for Bioethics. The bioethicists were asked to provide a list of what they believed to be the top ten ethical challenges facing the public, which they could pull from the list of 38 themes or provide additional themes in their own words. In this context the phrase "ethical challenges facing the public" was meant to imply issues, situations, or problems, which have ethical implications, and would impact or affect the public either directly or indirectly. Although there were no formal criteria for determining the relative impact of the various challenges, the panel members considered such factors as the prevalence of the challenge (how often it occurs and is likely to occur in the future), how many patients and families are and will be affected by the challenge, and the seriousness of the impact on the public.

The panel members each responded by email with their list of ranked challenges, along with brief explanations as to why their chosen items were important and challenging. Two of the authors (SKM and JB) then clustered and reworded the themes as necessary to meet a desired level of specificity, and any themes from the original list not ranked by any panel member were dropped from the list. Following this, a list of 32 items was fed back to the panel in advance of a face-to-face meeting. The main purpose of this meeting was for the group to narrow the list further by grouping similar challenges together to make sure that all items were in fact distinct challenges. From this meeting a new list of 23 items was circulated for the second round of ranking, in which participants were again asked to rank their top ten items and give rationales for their rankings. This third round of ranking produced the final list of top ten challenges. The process was stopped after the third round because the list of challenges could not be specified or differentiated any further. The overall ranking was done as per the Delphi method, whereby the highest ranked scenario cited by a panel member was then assigned ten points, followed by the second highest ranked scenario receiving nine points, and so on until the tenth highest ranked scenario. Individual scores were summed up to create a total score for each scenario and a corresponding ranked list for the group. The maximum score that could be achieved by a single item was 120, which would result only if the same item was ranked as the top challenge by all twelve panel members.

Results of the study are listed in Table 1 . In addition to the rankings, the comments from the panel members made during both the face-to-face meeting and the third round of ranking were collected and serve as the basis for much of the content in the Discussion section. With a total of 113 out of a possible 120 points, the highest ranked ethical challenges facing the public in health care was disagreement between patients/families and health care providers over treatment decisions. According to the panel, these disagreements typically take one of two forms: health care professionals might push a treatment option (either for more or less treatment) that patients and families deep unacceptable, or conversely patients/families may push a treatment option (more or less treatment, or different treatment as in alternative or complementary treatments) that health care professionals deem unacceptable. We expand on this challenge in the "Discussion" section of the paper below.

The second highest ranked ethical challenge facing the public in health care, with 102 total points, was waiting lists. This has been a growing problem in Canadian health care as progressively increasing demand for health care services has put mounting pressure on the already strained Provincial health care systems in the country. According to the panel, waiting for needed care may in some cases compromise the health status and outcomes of patients, impede their ability to return to normal functioning at work and at home, and may also contribute to psychological distress. Waiting lists may also contribute to inappropriate use of scarce resources as is the case when acute care beds are used for long-term care patients, or ICU beds for chronic care patients. Waiting lists also raise the issue of geographical inequities among regions or various health centres.

The third highest ranked challenge was issues related to access to needed health care services for the aged, chronically ill and mentally ill. There are two components to this set of issues: one, according to the panel, is the marginalization of populations such as the elderly and mentally ill due to negative attitudes of many citizens toward those populations. The other component is the historical lack of priority of the needs of these populations in the funding allocation schemes of Canadian health care: the bulk of the funding has traditionally gone toward acute, life-saving care, while long-term care, rehabilitation care, and mental health have been grossly under-funded. According to the panel, socially or economically disadvantaged or mentally ill patients require appropriate advocacy to ensure their needs are met. Lack of patient compliance or self-care is sometimes used as reasons to withdraw resources. According to the panel members, we have an ethical obligation to acknowledge and challenge discriminatory beliefs around age, culture, and mental illness that are culturally and socially constructed in order to reduce the risk of emotional and physical harms of the vulnerable in our hospitals and nursing homes. Often these issues emerge when resources are limited.

The fourth ranked challenge was the shortage of family physicians or primary care teams in both rural and urban settings. According to a 2002 study published by the Canadian Institute for Health Information, the proportion of Canadian medical graduates starting practice as a general or family practitioner dropped sharply, from a high of 80% in 1992 to only 45% in 2000 [ 1 ]. This has become such a significant problem in Canadian health care that it was one of the major issues in the recent contract negotiations between the Ontario government and the Ontario Medical Association [ 2 , 3 ]. Many Canadians living in rural areas simply do not have family physicians; in urban settings many patients have to wait so long to see their family physicians that some choose to seek care in emergency rooms as an alternative. This just puts added pressure on already stressed emergency rooms in major Canadian cities. The shortage of family physicians is of considerable concern for a country whose health care system is centred on universal and reasonable access to medically necessary health care services.

The fifth ranked ethical challenge facing the public by the panel was the issue of medical error. Although errors have always been part of medicine, it wasn't until the 1999 report from the Institute of Medicine in the U.S., To Err is Human: Building a Safer Health System [ 4 ], that the public was made aware of how common medical errors actually are. Examples of such errors can include things that affect single patients, such as a patient receiving the wrong prescription or dosage of medication, or a patient having the wrong surgery performed, or things that impact a larger patient group, as when a hospital fails to properly sterilize surgical equipment. Although medical errors do not in themselves represent an ethical challenge per se, they do carry with them significant ethical implications. For instance, the prevalence of medical errors raises such ethical questions as if, under what circumstances, and how medical errors should be disclosed to patients and/or families.

Sixth on the list, but well behind the issue of medical error in overall scoring, was the challenge associated the appropriate use of pain medication in the terminally or chronically ill, and the use of palliative care at the end of life. For example, health care providers sometimes struggle with how to use pain medication appropriately for terminally ill patients because treating the patient's pain sufficiently can potentially hasten the death of the patient. The panel has suggested that this is one of the contributing factors behind the widespread under-treatment of pain in the terminally and chronically ill. Another challenge that falls into this category surrounds the timing of palliative care, i.e., decision making around when is the appropriate time to shift from a curative to a palliative approach to care.

Seventh on the list according to the panel was the challenge of obtaining informed consent in the health care setting. Research [ 5 ] and experience of the panel have shown that there is a huge gap between informed consent in theory and informed consent in practice: many patients do not or cannot read the consent forms they're asked to sign; consent discussions and capacity assessments are often superficial and rushed due to time constraints; and those same time constraints often contribute to staff not using interpreters with patients whose first language is other than English. The implication of this is that many patients may be subjected to medical interventions without providing properly informed consent. Since the ethical principle of respect for patient autonomy, on which the doctrine of informed consent is based, has become a central and foundational principle in modern Western health care, the implication of this challenge is troubling.

The eighth top challenge was a family of issues associated with participant involvement in research. There are a wide range of ethical issues related to research in the health care setting, including obtaining informed consent, the balance between providing participants with fair compensation and the risk that the compensation will be a coercive influence, the challenge of balancing benefits and risks of the research, issues around patient privacy and confidentiality, and the ethical appropriateness of involving in research participants who are not capable of giving an informed consent.

The ninth ranked challenge, finishing closely behind the challenges associated with research, was the challenge of substitute decision making. When a patient is incapable of making a particular health care decision, the health care team will turn to the substitute decision maker to make the decision. Depending on the particular jurisdiction there may be a legal hierarchy of decision makers, which typically places the patient's most intimate relationship at the top (spouse or partner) and other relatives toward the bottom of the hierarchy (many Canadian provinces and US states have such a hierarchy written into health care consent legislation). In the experience of the panel members, substitute decision makers often find this task to be a heavy burden, and struggle with the responsibility attached to making a potentially life-altering (and often life-ending) decision on behalf of their loved ones. This burden is experienced to the greatest degree when no guidance has been provided by the patient as to what his or her wishes would be in the current circumstances. When there is no guidance from the patient, conflict often ensues between the health care providers and the family/substitute decision makers as to what would be in the patient's best interests.

Finally, the tenth ranked challenge was that of surgical innovation. This is a challenge that patients and families will only face indirectly, as the general public is likely unaware of what the issues are related to surgical innovation. Surgical innovation raises such questions as, should innovative surgical techniques be considered research and be required to go through research ethics approval? Since variation is often part of the routine process of perfecting surgical techniques, it becomes difficult to ascertain when a surgical innovation becomes an experiment that requires research ethics approval. Also, what protections should be in place to ensure that innovative techniques or procedures can be developed while the risks to patients are minimized?

There are a number of benefits that can be realized with an exercise focused on ranking the top ten ethical issues the public may face. These include providing new contributions to knowledge, raising public awareness, and re-focusing attention on the top challenge. These benefits will be discussed in the discussion section below.

Providing new contributions to knowledge

The issues described as top ethical challenges by the panel have all been discussed individually in the literature, some extensively. And there have been a few attempts in the past to elicit the views of particular groups on major ethical issues in specific areas. For example, Ersek at al. surveyed a group of oncology nurses to elicit the ethical issues determined to be most important to that group [ 6 ]. Along slightly different lines, Walker et al. interviewed a group of physicians and nurses to elicit their perception of "ethics problems" in the care of their patients [ 7 ]. However, these previous studies have typically focused on the views of a specific group of health care professionals on ethical issues in particular health care contexts. No attempt has ever been made to seek the opinion of clinical bioethicsts who are in a unique position to offer comment on the overall ethical issues in the health care system. Furthermore, despite extensive coverage of ethical issues in the healthcare literature, no systematic effort has been made to collate and rank these kinds of issues from the perspective of the impact on the public.

Raising public awareness

A second benefit of such an exercise is that it can be part of an effective strategy to bring these challenges to the public's attention. Another component of the public awareness strategy might include a press release or other form of media attention coordinated with the publication of the research paper. Even the paper itself can spark discussion and bring the issues to the public's attention. Not only would this help to inform the public about ethical challenges they may confront in the health care system to they can be better prepared for those challenges, but it can help garner the public's support in advocating for steps to be taken to address the top challenges.

The challenges described by the panel will impact patients and their families in different ways and to varying degrees. For example, waiting lists (ranked 2 nd ) and the shortage of family physicians (ranked 4 th ) are challenges that will likely have an impact that is felt directly by a large percentage of the public. The same can be said of the third ranked challenge, access to needed health care resources for the aged, chronically ill, and mentally ill, and that challenge will impact an increasing number of patients and families in the future as our populations age and the number of elderly and chronically ill patients rise. This direct impact on the public, combined with the attention that issues like waiting lists do receive in the media, means that some of the challenges described by the panel are already at the forefront of the public's attention. On the other hand, the public is likely to be largely unaware of some of the other challenges mentioned by the panel. These are the challenges that tend to impact a smaller number of patients and families, such as issues related to participation in research (ranked 8 th ), or may impact patients and families more indirectly, such as the issues related to surgical innovation (ranked 10 th ).

Re-focusing attention on the top challenge

The most interesting result of this study is that the ethical challenge ranked highest by the panel is a challenge that actually receives very little attention in the popular media and at the level of government, and a challenge of which most members of the public are likely completely unaware. It is not surprising, however, that a panel of clinical bioethicists ranked disagreements between patients/families and health care professionals over treatment decisions as the top ethical challenge facing the public in health care. It is not surprising because it is probably the most common reason for requests for ethics consultations, and an area in which many bioethicists focus their research activities. A 2001 study by DuVal et al. found that the most common trigger for ethics consultations among U.S. internists was a desire for help to resolve a conflict [ 8 ]. Although the most common arena in which these disagreements occur is the intensive care unit, they can and do occur between patients/families and health care professionals in virtually every health care context: palliative care, rehabilitation, mental health, surgery, general internal medicine, family medicine, and so on. These conflicts can be as serious as an emotionally charged fight over a decision to withdraw aggressive treatment from a terminally ill patient in the intensive care unit, or as mundane as a family physician refusing to acquiesce to a patient's request for antibiotics for a viral infection.

According to the panel, it's the end-of-life critical care cases that tend to be the most emotionally charged, and the most intractable, because these are the cases in which the most is at stake – they typically amount, literally, to conflicts over life and death. A paradigm example of what has become the most common scenario would involve a patient in the late stages of a terminal illness, such as cancer with multiple metastases, or an elderly patient with multiple co-morbidities, who is ventilated in the intensive care unit. The family would be demanding that "everything" be done to maintain the patient's life, while the team feel strongly that subjecting the patient to aggressive interventions would amount to torture. Emotions run high, conflict ensues, and communication inevitably breaks down.

The above is a paradigm example of what is often referred to in the literature and by health care professionals in the clinical setting as a "futility" case. Although there are volumes of literature on the problems associated with the definition and use of the concept of futility, health care professionals know exactly what is meant when a colleague uses the concept: the likely harms of the aggressive intervention(s) outweigh the potential benefits to such a degree that subjecting the patient to the intervention(s) violates their professional (and sometimes personal) values. From the perspective of the health care professionals, the "right" decision is obvious and they cannot understand why the family doesn't see it the way they do. This often leads to these families being labelled as "irrational" or "unreasonable" by members of the health care team.

The family, on the other hand, views the situation very differently. They will tend to focus on the positive, holding out hope that their loved one will beat the odds. If the physician tells them their loved one has a 90% chance of mortality, what they hear is that their loved one has a 10% chance of survival. They aren't guided by success rates or statistics or prognostics; they are guided by devotion and/or a sense of duty to their loved one, a protective instinct, and hope. They may also be guided by deeply held religious beliefs, which they claim are also held by the patient. From the family's perspective, the health care professionals are being insensitive and disrespectful, unwilling to listen to or accept what is important to them. Sometimes families will go so far as to accuse the health care team of wanting to withdraw treatment to save money or to give the resources to another patient. Many of the panel members reported having been involved in ethics consultations where family members have expressed these sentiments.

What lies at the root of these conflicts is a clash of value systems. It is our value systems that influence the decisions we make, especially when we are faced with significant life-altering decisions in the health care setting. But it is not just patients and their families that are guided in their decisions by their values; health care professionals also come to their encounters with patients and families with their own value systems, both personal and professional. The fact that Canada is one of the most culturally diverse nations in the world means that clashes between the value systems of patients/families and health care professionals may be more common in Canadian health care institutions than in other countries.

Addressing the top challenge

Compared to the attention given to many of the challenges listed in the top ten, it is remarkable how little attention has been given to the top challenge. It is especially remarkable given that these conflicts occur in health care institutions across the country on a daily basis. Below, we propose several steps to help address this top challenge.

1. Educating health care professionals : Although most health care professionals are now taught communication skills, they are not taught the negotiation and mediation skills needed to address serious disagreements. The key is to make an attempt to understand the patient's perspective. We recommend that all health professional programs – undergraduate, postgraduate and continuing – takes steps to address this deficiency;

2. Creating policies for health care institutions : Some institutions have developed policies on cases of disagreement, especially at the end of life, but there is no consistency in this area across institutions. Some national accreditation organizations, such as the Canadian Council on Health Services Accreditation http://www.cchsa.ca and the Joint Commission on Accreditation of Healthcare Organizations in the U.S. http://www.jcaho.org , require health care institutions to have systems in place to address ethical issues facing patients, family members, and staff. We recommend this requirement be sharpened to include mechanisms to resolve disagreements between the health care team and patents or their substitute decision makers. In addition, it may be worthwhile to explore the plausibility of approaching policy development in this area through a process of public consultation. Having stakeholders with diverse value systems come together to discuss the challenge may prove to be a more fruitful approach than applying the standard top-down approach;

3. Examining the patient's perspective : Disagreements between patients or their substitute decision makers and health care teams present a difficult problem with no perfect solution. What is needed is a better understanding of the patient's perspective on this challenge. Some excellent work has been done in the attempt to shift the focus of end-of-life issues from the perspective of health care professionals and bioethicists to patients themselves [ 9 , 10 ]. However, what is still needed is quality research that focuses specifically on the perspectives of patients toward disagreements over treatment decisions;

4. Reporting to the public : Research studies like ours are only one part of a strategy to address the top challenge. A key part of the strategy would be a systematic effort to keep the public informed of such research and the attempts being made to address the challenge. National health councils or other similar bodies would be an excellent mechanism to pull together the diverse initiatives described above and to keep the public informed. Not only should the public be kept informed of steps to address the challenge but they should ideally be involved in the process itself. As mentioned above, one example of involving the public in the process would be to engage the public in the development of policies or guidelines to help address the top challenge.

Limitations of the study

The main limitations of this study relate to the generalizability of the results. First, the ranking of challenges may not be generalizable to contexts outside of Canada. Some of the challenges listed may be challenges that are particular to the Canadian context because of our Medicare system, such as the challenge of waiting lists or the shortage of family physicians. If this same study were conducted in other countries, it is possible that these challenges would be ranked much lower than in our study, or may not be ranked as a major challenge at all. However, we believe that on the whole our results are likely generalizable at least to other industrialized nations. The challenge of medical error, for example, is a universal challenge because medicine is, by its nature, a human endeavour. As long as humans remain imperfect, medical errors will occur. Moreover, we would predict that the top ranked challenge, disagreements between patients/families and health care providers over treatment decisions, would probably appear at or near the top of similar lists in other industrialized nations. Thus, although the panel was asked to report on the top ethical challenges facing Canadians in health care, we believe the results of this study would be of interest to other countries.

Second, because the panel was made up of clinical bioethicists in Toronto, the ranking of challenges may not be representative of the challenges facing the entire Canadian public. Some of the challenges might be considered more or less significant or prevalent in other parts of Canada, especially since there are some very apparent differences between the health care systems of the different provinces. Nevertheless, for the same reasons as mentioned above in the context of generalizability to other nations, we believe the results are in general representative of the challenges facing the Canadian public.

Third, since our panel was made up entirely of clinical bioethicists, we recognize that the results may not be generalizable to other groups. For example, if the panel was comprised of, or included, members of the public, hospital administrators, or clinicians, the results might have looked very different. Moreover, although the panel members do represent a wide range of health care instutitions, there were health care settings not represented amongst the group (e.g., home care or community family medicine). However, we believe that this is not a significant limitation of the study because the purpose was not to make a factual claim about what, objectively speaking, are the top ten ethical challenges facing the public. Rather, the purpose was to identify what those top ten challenges are from the perspective of a group of highly qualified and experienced clinical bioethicists who work in a variety of health care institutions.

Finally, we recognize that the modified Delphi process that we have presented in this paper is not typical because of the face-to-face meeting of panel members that took place prior to the final round of ranking. One of the potential limitations of including a face-to-face meeting during a consensus process is that a member or members of the group could exert influence over others, thus skewing the process away from genuine consensus. Nevertheless, we believe this potential problem was mitigated by the fact that the face-to-face meeting was not actually part of the ranking process but was an intermediate step between ranking rounds for the purpose of clarifying and differentiating the items. Thus, the consensus process itself was not directly affected by the face-to-face meeting.

Patients and their families face a number of ethical challenges in health care. Many of these challenges are no different from the kinds of challenges faced by patients and families in other industrialized nations. Other challenges on the list are more particular to our social context, with their roots in the very nature of the Canadian Medicare system. Waiting lists, access to needed care for the aged, chronically ill, and mentally ill, and the shortage of family physicians, are challenges that may impact Canadians to a greater or lesser degree than citizens of other nations. Interestingly, these three context-specific challenges were all ranked in the top four of the top ten ethical challenges facing Canadians. Moreover, some of the challenges have received far more public attention than others. Since so little attention has been given to the top ranked challenge, disagreements between patients/families and health care professionals over treatment decisions, we have suggested several steps to help address this top challenge.

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Acknowledgements

Grant support: Dr. Singer is supported in part by a Distinguished Investigator award from the Canadian Institutes of Health Research.

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Jonathan M Breslin, Susan K MacRae, Jennifer Bell & Peter A Singer

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JMB contributed substantially to the drafting of the article and gave final approval for the version to be published.

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Breslin, J.M., MacRae, S.K., Bell, J. et al. Top 10 health care ethics challenges facing the public: views of Toronto bioethicists. BMC Med Ethics 6 , 5 (2005). https://doi.org/10.1186/1472-6939-6-5

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By Sandeep Jauhar

Dr. Jauhar is a cardiologist in New York who writes frequently about medical care and public health.

Not long ago, I took care of a middle-aged man at my hospital who had severe heart failure requiring life support. When he was disconnected from machines after a few days of treatment, he began to display psychotic symptoms, including delusional thinking, tangential speech and paranoia. He had a long history of untreated schizophrenia, I learned, which had estranged him from family members and friends, with whom he had virtually no contact.

My patient demanded to leave the hospital. However, sending him home was going to be a problem. He could not take care of himself. There was little chance he would take his medications, including a blood thinner to dissolve a clot in his heart before it caused a stroke. He was even less likely to take psychiatric drugs that he did not believe he needed.

My colleagues and I didn’t know what to do, so we called the treating psychiatrist. The psychiatrist immediately declared that our patient lacked the capacity to discharge himself from the hospital. The patient could not grasp the implications of this choice, for instance, or properly weigh its risks and benefits. The psychiatrist said the patient should remain in the hospital to receive psychiatric treatment, even against his will.

The psychiatrist’s opinion made sense to me. Patients with untreated schizophrenia have a higher rate of death than those who undergo treatment. Hopefully treatment would restore my patient’s judgment to the point where he would take his medications when he went home — or even decide not to take them, but to make that risky decision in the full appreciation of the likely consequences. (If autonomy means anything, it means that patients have the right to make bad decisions, too.) Treating him, even over his objections, seemed to be in his best interests.

However, according to New York law — and the law of other states — such involuntary treatment would require a court order. As doctors, we would have to plead our case before a judge. But was a judge without medical or psychiatric expertise the best person to decide this man’s fate?

In this case and also more generally, I think the answer is no. The law ought to be changed to keep such decisions in hospitals — in the hands of doctors, medical ethicists and other relevant experts.

Doctors don’t always have to resort to the courts to treat patients without their consent. There are some notable exceptions, such as during a life-threatening emergency (if a competent patient has not previously refused such treatment) or when there is a pressing societal interest (such as requiring patients with communicable tuberculosis to take antibiotics).

But judicial review has been the cornerstone of “treatment over objection,” as it’s known, for the past four decades or so. Appellate courts in the 1980s ruled that judicial hearings in such cases are needed to safeguard patients’ rights. For example, in 1983, in Rogers v. Commissioner of Department of Mental Health, the Massachusetts Supreme Judicial Court declared that a judge could override medical judgments favoring involuntary psychiatric treatment.

The underlying motivation behind judicial review was and remains laudable: to avoid the sort of paternalistic abuses that have characterized too much of medical history. Doctors often used to withhold bad news from patients, to cite just a small example. Involuntary treatment, even with benevolent intentions, reeks of such paternalism.

But though medical practice is by no means perfect, times have changed. The sort of abuse dramatized in the 1975 movie “One Flew Over the Cuckoo’s Nest,” with its harrowing depiction of forced electroconvulsive therapy, is far less common. Doctors today are trained in shared decision-making. Safeguards are now in place to prevent such maltreatment, including multidisciplinary teams in which nurses, social workers and bioethicists have a voice.

In addition to being less necessary to prevent abuse than they once were, courts are by nature poorly suited for making decisions about treatment over objection. For one thing, they are slow: Having to go to court often results in delays, sometimes up to a week or more, which can harm patients who need care urgently.

Moreover, judges have neither the experience nor the expertise to properly evaluate psychological states, assess decision-making capacity or determine whether a proposed treatment’s benefits outweigh its risks. It is no surprise that by some estimates 95 percent or more of requests for treatment over objection are approved by judges, who invariably haven’t met the patient and must rely on information provided by the treating medical team.

A better system for determining whether a patient should be treated over his or her objection would be a hospital hearing in which a committee of doctors, ethicists and other relevant experts — all of whom would be independent of the hospital and not involved in the care of the patient — engaged in conversation with the medical team and the patient and patient’s family. Having hearings on site would expedite decisions and minimize treatment delays. The committee would make the final decision.

Of course, such a committee would have to be granted immunity from legal liability (as with judges in our current system), so that experts would be willing to serve and speak candidly. Patients’ interests could be safeguarded by requiring the committee to publish its reasoning. Periodic audits by a regulatory body could ensure that the committee’s deliberations were meeting medical and ethical standards.

In the event that the committee could not reach a consensus on the best course of action (or if there were allegations of wrongdoing), then the parties involved could appeal to a judge. But that would be the exception rather than the rule.

In the case of my patient with heart failure, the decision ultimately didn’t have to go before a judge. Multiple discussions involving the patient, the hospital ethics and palliative care teams, social workers, nurses, psychiatrists and other doctors — discussions that in many respects served the function of a formal committee of the sort I’m proposing — yielded an agreement with the patient that his interests would be best served by sending him home with hospice care.

Capacity must be judged relative to the decision being made, and it became clear over the course of hospitalization that our patient understood the terminal nature of his condition and had the capacity to choose hospice care. Forced treatment was unlikely to significantly improve his psychiatric symptoms before the natural progression of heart failure caused his death.

So he was discharged home. It was the best decision under the circumstances, one reached by expert deliberation, not legal procedure. He passed away a few weeks later without, fortunately, ever setting foot in court.

Sandeep Jauhar ( @sjauhar ) is a doctor at Northwell Health in New York and the author, most recently, of “ My Father’s Brain : Life in the Shadow of Alzheimer’s.”

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REVIEW article

This article is part of the research topic.

Healthcare in the age of sapient machines: physician decision-making autonomy faced with artificial intelligence. Ethical, deontological and compensatory aspects

Artificial Iintelligence in healthcare system: an Italian perspective of ethical and medico-legal implications Provisionally Accepted

• 1 Azienda Ospedaliero Universitaria Consorziale Policlinico di Bari, Italy
• 2 Section of Legal Medicine, Department of Interdisciplinary Medicine, School of Medicine, University of Bari Aldo Moro, Italy
• 3 Kore University of Enna, Italy
• 4 Department of Medical, Surgical Sciences and Advanced Technologies G.F. Ingrassia, University of Catania, Italy

The final, formatted version of the article will be published soon.

Artificial intelligence (AI) is a multidisciplinary field intersecting computer science, cognitive science, and other disciplines, able to address the creation of systems that perform tasks generally requiring human intelligence. It consists of algorithms and computational methods that allow machines to learn from data, make decisions, and perform complex tasks, aiming to develop an intelligent system that can work independently or collaboratively with humans. Since AI technologies may help physicians in life-threatening disease prevention and diagnosis and make treatment smart and more targeted, they are spreading in health services. Indeed, humans and machines have unique strengths and weaknesses and can complement each other in providing and optimizing healthcare. However, the healthcare implementation of these technologies is related to emerging ethical and deontological issues regarding the fearsome reduction of doctors' decision-making autonomy and acting discretion, generally strongly conditioned by cognitive elements concerning the specific clinical case. Moreover, this new operational dimension also modifies the usual allocation system of responsibilities in case of adverse events due to healthcare malpractice, thus probably imposing a redefinition of the established medico-legal assessment criteria of medical professional liability. This article outlines the new challenges arising from AI healthcare integration and the possible ways to overcome them, with a focus on Italian legal framework. In this evolving and transitional context emerges the need to balance the human dimension with the artificial one, without mutual exclusion, for a new concept of medicine "with" machines and not "of" machines.

Keywords: artificial intelligence, Medico-legal practice, decision-making process, Medical professional liability, black box, Informed Consent, Ethics

Received: 23 Nov 2023; Accepted: 16 May 2024.

Copyright: © 2024 Sablone, Bellino, Cardinale, Esposito, Sessa and Salerno. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Dr. Sara Sablone, Azienda Ospedaliero Universitaria Consorziale Policlinico di Bari, Bari, Italy

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• http://orcid.org/0000-0002-8841-5635 Jaime Garcia-Iglesias 1 , 2 ,
• Brian Heaphy 2 ,
• Sharif Mowlabocus 3 ,
• Neta Yodovich 2 ,
• http://orcid.org/0000-0003-4914-0322 Maurice Nagington 4 ,
• Karissa Patton 1 ,
• Sophie Atherton 1 ,
• http://orcid.org/0000-0003-0462-9669 Andrea Ford 1
• 1 Centre for Biomedicine, Self and Society, Usher Institute , The University of Edinburgh , Edinburgh , UK
• 2 School of Social Sciences , The University of Manchester , Manchester , UK
• 3 Communication & Media Studies , Fordham University , New York , New York , USA
• 4 Nursing, Midwifery, and Social Work , University of Manchester , Manchester , UK
• Correspondence to Dr Jaime Garcia-Iglesias, Centre for Biomedicine, Self and Society, The University of Edinburgh Usher Institute of Population Health Sciences and Informatics, Edinburgh, UK; jgarcia6{at}ed.ac.uk

In recent years, dating apps have become important allies in public health. In this paper, we explore the implications of partnering with dating apps for health promotion. We consider the opportunities and challenges inherent in these collaborations, paying special attention to privacy, trust, and user care in a digital environment.

Despite their potential as targeted health promotion tools, dating apps raise significant ethical concerns, including the commodification of user data and privacy breaches, which highlight the complexities of blending healthcare initiatives with for-profit digital platforms. Furthermore, the paper delves into issues of discrimination, harassment and unequal access within these apps, factors which can undermine public health efforts.

We develop a nuanced framework, emphasising the development of transparent data policies, the decoupling of content moderation from health initiatives and a commitment to combat discrimination. We underscore the importance of embedding app-based health initiatives within broader care pathways, ensuring comprehensive support beyond the digital domain. This essay offers vital insights for public health practitioners, app developers and policymakers navigating the intersection of digital innovation and healthcare.

• social science
• health policy
• sexually transmitted diseases

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This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See:  https://creativecommons.org/licenses/by/4.0/ .

https://doi.org/10.1136/medhum-2024-012901

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Introduction

In November 2023, Grindr, the most popular dating app for men who have sex with men (MSM), announced its partnership with MPOWER (in Ireland) and the Equality Movement (in the country of Georgia) to allow app users to order free, postal HIV testing kits through the app ( Harrison-Quintana 2023 ). This is the latest example of a trend whereby dating apps are moving beyond offering matchmaking services to becoming significant players in public health, specifically in the sexual health arena. In the wake of the COVID-19 pandemic, dating apps have experienced an unprecedented surge in usage: as many as 30% of adults in the USA have used a dating app ( Duguay, Dietzel, and Myles 2024 ), and a recent survey by eHarmony projects that by 2040 up to 70% of relationships could commence online ( Holtzhausen et al 2020 ). In this evolving landscape, apps have been lauded as having the potential to serve as valuable tools in public health ( Arnold 2023 ). However, the use of apps for these purposes can be problematic as it requires negotiating challenges to do with trust, risk and supporting users in digital settings.

Most dating apps are for-profit businesses, operating in an industry with vastly differing data compliance and confidentiality requirements to those used in medicine and public health. Thus, issues of privacy, content moderation and user care must be considered when collaborating with them. It is from this perspective that we develop a critically reflexive approach for analysing health partnerships with dating apps; one that considers the material, political and social conditions that underpin these collaborations. As dating apps increasingly become key partners in public health, particularly in the area of HIV and other sexually transmitted infections (STIs), it is imperative to question their effectiveness, and the ethical challenges and potential pitfalls that may arise from their use for this purpose.

Dating apps: tools for public health?

The term ‘dating app’ commonly refers to smartphone-based, digital applications that allow users to create a profile (including images) and to view the profiles of other users. Users can search for others based on shared relational interests, preferences and/or location and can contact one another. Dating apps are said to have given rise to ‘new forms of intimacy and affective connection’ ( Gibson 2021 ) that blur the online-offline divide and mediate diverse forms of social, intimate and sexual interactions. One of the most characteristic features of contemporary dating apps is their use of the geolocative capacity of smartphones ( Duguay, Dietzel, and Myles 2024 ). According to a recent Pew survey in the USA, the dating apps Tinder, Match and Bumble are the are most widely used across all demographics, whereas the use of Grindr and Her is more prevalent among lesbian, gay and bisexual (LGB) adults. LGB adults are twice as likely as heterosexuals to report using dating apps (51% vs 28%) ( Vogels and McClain 2023 ).

While some researchers have sought to explore the link between dating app use and poorer health outcomes (including increased STI diagnoses or lower mental health outcomes), evidence of a causal link remains inconclusive ( Holtzhausen et al 2020 ). However, dating apps have also emerged as key partners in public health across a range of domains. Some researchers argue that dating apps have afforded the reconfiguration of sexual dynamics ( Hollingshead, Dowsett, and Bourne 2020 ), presenting new opportunities for users to see, engage with and represent themselves as intimate actors ( Brubaker, Ananny, and Crawford 2016 ). In a systematic review, Cao et al (2017) argue that dating apps have several benefits for public health, including the ability to narrowly target specific groups. They found that dating apps have been useful in increasing awareness around HIV and other STI testing. An example of successful collaboration is the Building Healthy Online Communities (BHOC) initiative, which is a consortium of public health organisations that works with dating app businesses to identify and advocate for apps to implement health-promotion features, such as sexual health-related profile options, testing reminders and, most recently, the ability to order HIV tests via the platform. BHOC emphasises that a key objective of these partnerships is to ‘promote strategies on dating apps that are sustainable and reach high numbers of users, and require no or little ongoing investment by public health programmes’ ( Hecht et al 2022 ).

In the recent 2022–23 mpox outbreak, Grindr—the most popular dating app among MSM—became a partner in public health on the issue ( Holloway 2022 ). In a survey of mpox awareness in the UK, while it was likely that the majority of respondents gained knowledge of the virus from mainstream and LGB targeted media or informal sources, 13% of respondents reported that dating apps were an important source of mpox information ( Paparini et al 2023 ). In this respect, dating apps may be particularly useful in informing underserved groups, such as men who have sex with men (MSM) but who do not identify as gay or bisexual, while also going some way towards reducing stigma related to sexual public health. Grindr also partnered with the Pan American Health Organization to disseminate information on mpox to LGB+ communities in the Region of the Americas and tackle misinformation ( Pan American Health Organization 2023 ). At other times, using dating apps for public health may be more ‘hand-made’. Linn County Public Health in Iowa created ‘official’ profiles in a variety of apps to perform syphilis partner notification (ie, notify partners of a person who has been diagnosed with syphilis), arguing that ‘the way we used to connect just isn’t working anymore. We need another tool in our toolbox […] one better aligned with the many ways people now meet their partners’ ( Arnold 2023 ). Reporting on this, Harvard Public Health magazine comments how dating apps could ‘become a key component in STI prevention’ ( Arnold 2023 ). In some of these examples, dating apps have been effective in disseminating information to underserved groups, and in resource-limited settings where alternative interventions may not be feasible. This fact should be understood in terms of the history of successful HIV/AIDS prevention work in the UK, the USA and elsewhere in the global north, which provides clear evidence that health intervention tailored to specific communitie are especially effective when they take place in spaces already used by the target population. When translated into the contemporary digital landscape, it makes sense that dating apps, which have proven popular with gay, bisexual and MSM, have become a site for local scale public health activity.

Beyond sexual health matters, dating apps have played roles in addressing broader public health concerns. In the context of COVID-19, partnerships between leading dating apps and governments have been established to boost vaccine uptake, with in-app rewards for those sharing their COVID-19 vaccinated status by, for example, adding “I’m vaccinated” tags to their profiles ( Department of Health and and Social Care 2021 ). Collaborations can also extend beyond infectious diseases: in the UK, Tinder has partnered with the UK Government to tackle loneliness through sharing messages about coping and support with users, and partnered with the National Health Service (NHS) to raise awareness of organ donation ( NHS Blood and Transplant 2015 ; Tinder 2023 ). These examples highlight how, much like social media on a broader scale ( Garcia-Iglesias et al 2023 ), dating apps offer distinctive opportunities for public health initiatives. Overall, there is evidence that apps provide numerous benefits for public health, particularly in the field of sexual health in terms of increasing awareness around STIs, facilitating testing and providing links to healthcare agencies while allowing for the narrow targeting of audiences.

The challenges of dating apps in public health

Dating apps, like many other digital platforms, have a questionable track record when it comes to issues of data privacy. In their study of gender politics in social media and dating apps, Bivens and Haimson (2016) argue that despite platforms aiming to present themselves as ‘neutral or open online spaces’ designed with users’ benefit in mind, ‘their primary goal involves generating, capturing and controlling user data’ for financial profit, giving them substantial power over users (2). The fact that user data have today become the principal commodity through which profit is realised by digital platforms (witness, for instance, the targeted advertising found on Facebook or Instagram), is a long-standing concern which takes on a new dimension when that data could include information such as the number of HIV testing kits ordered, the addresses to which they are posted to and so on.

Striking a careful balance between safeguarding users’ privacy and maximising profit is crucial, with dating apps often being described as a ‘security and privacy minefield’ ( O’Flaherty 2022 ). Numerous reports detailing incidents of stalking, data leakage, blackmail and even torture have been published since Grindr went online in 2007 ( Noto La Diega, Guido 2018 ). These raise concerns that are not incidental to dating apps but are inherent to their design and feasibility. In a study of privacy in gay dating platforms, Campbell (2005) argues that although many operate on a ‘freemium’ basis, these platforms require users to ‘exchange personal information—in essence, barter their privacy—for the privileges of membership’ ( Campbell 2005 , 672). This becomes especially problematic when those platforms become providers of health resources, as using dating apps for public health can require individuals to ‘pay’ for such service by forgoing their privacy. This fits with a general trend in ‘universal’ healthcare systems (such as the NHS in the UK) towards a ‘privatisation by stealth’ of healthcare. While the user might not be exchanging money for services, they are required to ‘give up’ something of value: their personal information. Whether in the contexts of a universal healthcare system, or a consumer-based one, this trend can be especially concerning when the services offered are specifically directed to groups that are marginalised socially, economically and culturally, for example, by gender, race, disability, geographical location and/or age.

Examples of problematic data policies on dating apps abound and complicate some of the benefits highlighted earlier. For example, in 2018, journalists reported that Grindr had been sharing data that could identify their users, including HIV status, date of testing, email and location, with third party companies ( Ghorayshi and Ray 2018 ). These are data which users were required to input if they wished to activate testing reminders. More recently, Grindr was fined €6.5 million by the Norwegian Data Protection Agency for disclosing data to advertising third parties without valid consent ( European Data Protection Board 2021 ). These data policies have important personal and security ramifications, such as identifying specific users or outing them in unsafe local contexts ( Tau and Wells 2022 ), and internationally where the consequences could be imprisonment, torture or even death (eg, Iran, Saudi Arabia, Nigeria).

While economically marginalised groups can be excluded from full access to the affordances of dating apps, as these usually require payment for a membership fee, research has also shown how apps have become hot-beds of discrimination and exclusion. This undermines users’ trust in dating apps, and can limit the reach of public health initiatives that are developed with them. Lauckner et al (2019) in a study of the experiences in dating apps of rural sexual minority men in the USA found that online dating often involved experiences of ‘deception, bullying or discrimination, and harassment or coercion’ both subtle and open ( Lauckner et al 2019 , 299). Li and Chen (2021) describe how Australian-based Chinese queer women have found dating apps to be permeated with racism and prejudice—even more so during COVID-19. Most worryingly, Conner (2023) has argued that these are not peripheral to app use but rather, that ‘mobile dating apps are structured to promote stigmatising other users and promote a sexual hierarchy rooted in heteronormative gender roles’ that disproportionately impacts minorities ( Conner 2023 , 126). For example, while some apps allow users to filter potential partners by factors such as HIV status, most rely heavily on pictures that allow for ‘informal’ discrimination in terms of race, gender, body type, age and so on.

Furthermore, dating apps operate with opaque policies. For example, the Terms of Service policies for Grindr and Tinder explicitly state that the apps reserve the right to ‘terminate any user’s account, for any reason and without any notice or our being liable to you’ ( Grindr 2023 ) or ‘terminate your account at any time without notice [and without] any refund for purchases’ ( Tinder 2021 ). These policies can complicate efforts to leverage these platforms for public health purposes. In fact, the US Centre for Disease Control and Prevention acknowledges, in their own toolkit for using dating apps for partner notification (to notify partners of a person who has been diagnosed with an STI), that no apps except for one (Adam4Adam) ‘have officially sanctioned the use of their apps for [organisational] partner services’ and that many organisations attempting to use them in this way ‘have had their profiles blocked on occasion by the managers of the app’ ( Centers for Disease Control and Prevention 2022 ).

This can cause particular difficulties when public health and criminal justice overlap in relation to sexual health. For example, in London, UK, the charity Controlling Chemsex uses profiles to promote and discuss health issues relating to chemsex (the sexualised use of drugs). However, the people accessing services this way may, ‘without notice’ be banned from apps for discussing drug use, thus precluding them from accessing the information or support. The opaque policies about who can use dating apps and for what purposes means that their use as public health tools is a complicated issue.

In summary, leveraging dating apps for public health requires a high degree of negotiation between the app and the potential public health partner, and is likely to be marred by substantial drawbacks to do with trust and risk in dealing with digital businesses whose primary concern is profit, and whose practices can encompass questionable privacy policies, and damaging (and often unchecked) dynamics of exclusion (economic positioning, racism or harassment and opaque moderation policies). These challenges underscore how the incorporation of these platforms into public health initiatives is not a simple or straightforward matter.

Towards a critically reflexive approach

In charting a path towards new approaches to dating apps and public health, it is crucial to avoid simplistic narratives that either vilify these platforms as contributors to STIs or uncritically deploy them for public health. Instead, we should recognise the increasing importance and utility of these platforms, particularly in resource-limited settings, and when seeking to engage underserved communities. In these contexts, dating apps are likely to become ever more instrumental in disseminating crucial health information. While acknowledging the benefits of partnering with dating apps, we call for a critically reflexive approach to such partnerships that reflects on and scrutinises the inherent tensions raised by their for-profit nature and business models. The approach we advocate foregrounds the following:

Acknowledgement that while partnerships with dating app businesses entail negotiations, ethical practice should not be an area of compromise.

Clear prioritising of the benefits of partnerships for dating app users, not the dating app business or the public health service.

Critical reflection on the ethical issues that arise in partnering with dating apps in public health, with emphasis on developing a transparent and publicly accessible policy detailing how the platform partner will handle user data.

This policy should mirror data protection guidelines currently used in clinical settings, and must include information regarding the timely, secure deletion of data.

Such a policy should explicitly confirm the platform’s requirement not to share user data (in any form) with third parties (including government agencies), and that these data will also be excluded from any direct or indirect form of monetisation activity (eg, targeted advertising sales).

The policy should be subject to review and approval by an ethics panel made up of peer experts.

There should be a decoupling of the platform’s standard content moderation policies and practices from public health initiatives, to ensure that users who seek support for practices that might run counter to the apps moderation policies (eg, about drug use) are neither censored nor penalised for discussing such practices.

An explicit commitment on the part of the dating app to monitor and address racial, gender, disability discrimination and body shaming, to ensure that users who seek support for their health do not face harassment, hate speech or intimidation.

The publication on the app of links to support services beyond the apps, to ensure that users understand the ways in which the partnership is embedded within a broader care pathway.

Publication of a periodic review of ethical issues encountered, how they were managed and implications for the partnership, to be considered and approved by expert ethics panel.

In summary, the use of dating apps has grown exponentially since they were first available, generating new forms of intimacy that often involve sexual practices. This requires a rethinking of how public health engages with and reaches its target base. While partnering with dating apps in sexual public health has clear advantages, not least in connecting with underserved populations, it also has its challenges. Here, we have focused on key ethical challenges linked to privacy, personal data, discrimination and exclusion, and argued that these are issues of paramount importance. We have offered an approach through which ethical partnerships can be thought about and managed: one that is based on and supports critical reflexivity.

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Not applicable.

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X @JGarciaIglesias, @NagingtonUoM, @karissapatton, @alillyf

Contributors JG-I: writing original draft, conceptualisation, guarantor. BH, SM, NY, MN, KP, SA, AF: writing—review and editing, conceptualisation.

Funding This research was funded in whole, or in part, by the Economic and Social Research Council (grant numbers ES/W002426/1 and ES/X010805/1). For the purpose of open access, the author has applied a CC BY public copyright licence to any author accepted manuscript version arising from this submission.

Competing interests AF sits on the Advisory Board of 'Period Realty' which is developing a period tracking app. There is no financial relationship to this post. MN has received speaker fees from Gay Health Network Ireland (€500).

Provenance and peer review Not commissioned; externally peer reviewed.

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