Ethical Issues in Photovoice Studies involving Key Populations: A Scoping Review

Photovoice, a community-based participatory research method, employs images and words to convey participants' needs, concerns, and desires. It proves particularly valuable in researching marginalized communities who face elevated health risks, disease transmission, and social and health disparities. This paper seeks to investigate the ethical considerations inherent in photovoice research projects. We conducted an extensive literature review spanning four databases to identify pertinent photovoice studies. Ethical issues from the selected articles were identified, categorized, and summarized. Our analysis of twenty-five photovoice studies uncovered various ethical concerns, which had been grouped into informed consent, participant safety and disclosure, privacy and confidentiality, misrepresentation, power dynamics, and compensation. In essence, our findings underscore the importance of addressing these ethical concerns to uphold the rights and autonomy of participants, even as photovoice research strives for authenticity, inclusivity, and empowerment.


Background
Photovoice was first introduced in 1992 by Caroline C. Wang of the University of Michigan, and Mary Ann Burris in a project to empower the disadvantaged rural women in Yunnan Province, China, to share their voices on the policies and programs affecting them (Wang and Burris 1997).Since then, photovoice has been adopted and used in different research settings and populations worldwide.Wang and Burris defined Photovoice as a "process by which people can identify, represent and enhance their community through a specific photographic technique" (Wang and Burris 1997).The idea of photovoice is to make use of images and words together to express the participants' individual or their community needs, concerns, or desires.It is a qualitative research method used mainly in community-based participatory research.In the photovoice project, participants take their own photos and use their own words to respond to an interview, share their thoughts or answer questions that are closely related to their community (Nykiforuk et al. 2011).
In this context, the designation "marginalized communities" pertains to specific demographic groups that confront an elevated susceptibility to contracting or transmitting health-related conditions, in addition to grappling with pronounced social and health disparities.On certain occasions, these groups may also be denoted as "key populations" or under other synonymous terms.Their proclivity toward vulnerability or marginalization stems from various factors, including their behaviors, occupations, socioeconomic standing, and the intricate interplay of legal and societal milieu (WHO 2011).Examples of such groups encompass men who have sex with men (MSM), people who inject drugs (PWID), sex workers, transgender individuals, and individuals living with HIV/AIDS.
Multiple discussions have taken place regarding the ethical and practical aspects of photovoice research, including subjects' recruitment, consent processes, data collection, invasion of privacy, and results dissemination, suggesting that there is a pressing need to establish a framework for monitoring the ethical considerations of photovoice research.
The aim of the review is to review the ethical challenges that may arise from a photovoice research project in general.

Search Procedure
A scoping review is performed to determine the ethical issues in applying the photovoice method in research.It provides a summary of findings drawn from existing literature and helps to make recommendations for future photovoice studies.A search of the literature using online electronic databases was conducted.The database for the search included PsycINFO, PubMed, Web of Science, and MEDLINE/PubMed.The keywords used in the scooping review are ((((((TI = (gender)) OR TI = (sex*)) OR TI = (drug)) OR TI = (substance)) OR TI = (HIV))) AND TS = (photovoice).

Inclusion/Exclusion Criteria
The title and abstract of the articles were screened following the inclusion criteria: (1) original research published in peer-reviewed academic journals, (2) being in the press before May 2023, (3) primary studies that apply Photovoice as the research 1 3 Asian Bioethics Review (2024) 16:109-129 method, (4) studies involved marginalized communities and/or key populations, and (5) being written in English.
Articles were excluded based on the following criteria: (1) review articles, reports, opinions, educational materials, health promotional articles, methods papers, presentations, and theoretical papers, (2) duplicate publications, and (3) non-English literature.

Screening and Results Charting
Extracted titles and abstracts from the search were reviewed by the first and second authors.The two reviewers met to perform the abstract review process and reached a consensus regarding article selection for further data extraction.The information was extracted and tabulated using a data extraction form in Excel.The following categories of information for each study were extracted: (1) authors, (2) aims of the study, (3) study designs/ methods, and (4) ethical issues related to the studies.

Results
Out of the initial 90 abstracts identified, a total of 11 duplicate abstracts were excluded from consideration.Subsequently, the remaining 82 abstracts underwent screening, resulting in the inclusion of 25 abstracts for further analysis (Fig. 1).The reasons for excluding the 57 articles were as follows: 4 articles were identified as review or opinion articles, 1 article was not written in English, 1 article was a meeting abstract, and 48 articles were deemed not relevant to the study.
Among the 25 articles included in this study, 5 of them focused on drug use, 9 explored the experiences of patients living with HIV, 5 centered around individuals living with HIV in general, 4 delved into the experiences of gender identity patients, and 2 examined the perspectives of sex workers (Table 1).
The studies had varied aims, but a common theme emerged, which was the utilization of photovoice as a method to gain insights into the opinions and experiences of marginalized populations.

Summary of Ethical Points based on the Articles included in the Review
In photovoice studies, informed consent is identified as the primary ethical concern, as observed in 22 examined papers.These papers highlighted the importance of providing participants with detailed explanations about the project before obtaining their consent (Table 2).
Privacy and confidentiality were emphasized in 18 papers, particularly due to the participation of marginalized populations.Measures such as conducting individual dialogue sessions instead of group settings, using pseudonyms for participants, and ensuring secure handling of recordings and data were mentioned by researchers like Desyllas and Kimera et al.
Participant safety and disclosure were mentioned in 8 papers, addressing concerns about potential restigmatization or retraumatization due to the exposure of sensitive photos.Some studies provided mental health care for participants, prohibited the exhibition of illegal activities, and offered support from professionals like psychiatric nurses, as noted by Kennedy et al. and Lofton et al.The potential power imbalance between researchers and marginalized participants was discussed in 7 papers.Strategies to address this issue included involving participants in the study process as much as possible to diminish power imbalances, as mentioned by Christensen et al. Teti et al. acknowledged that power imbalances could arise from factors such as race/ethnicity, socioeconomic status, and HIV status.
Compensation for participants was mentioned in 6 papers, with examples such as providing monetary compensation, vouchers, or other forms of recognition for their contributions, as seen in Barlow et al.Four papers addressed the potential misrepresentation of participants' intentions through the selected photographs.To prevent misrepresentation, involving participants in the selection of photographs was suggested by Jacobs et al.Additionally, the potential bias introduced by sampling methods and its impact on misrepresentation was discussed by Lennon-Dearing et al.

Discussion
Ethical considerations are frequently discussed in the literature on photovoice projects, particularly because these projects often focus on marginalized populations whose rights are frequently overlooked and undervalued (Wang and Redwood-Jones 2001).Upholding ethical standards is crucial in order to prevent the exploitation of these populations.
In our review of 25 papers, which focused specifically on marginalized populations such as drug users, gender identity patients, people living with HIV (PLWH), patients living with HIV, and sex workers, we have identified and categorized ethical concerns and challenges into six main groups: Informed Consent, Participant Safety and Disclosure, Privacy and Confidentiality, Misrepresentation, Power Dynamics, and Compensation.Additionally, some papers offer suggestions to address and overcome these ethical problems, which are grouped accordingly within each respective category.
In our review of 25 papers, the most prevalent ethical concern was obtaining informed consent.It is important to ensure that participants have a comprehensive understanding of their rights and the project before providing their consent.However, obtaining consent can be more complex in certain circumstances, such as when it involves minors, illiterate individuals, or those without legal guardians.For instance, Kimera et al. (2020) conducted a photovoice project involving participants aged 15-19.In addition to obtaining consent from the participants themselves, they also obtained informed consent from the caretakers or parents of the minors.Similarly, Lofton et al. (2020), who conducted a photovoice project with 24 youths, required participants to have their parents review the consent forms before providing their own consent.Special consideration was given to individuals with cognitive disabilities in obtaining consent, as highlighted by Jacobs and Harley (2014).They emphasized the importance of providing accessible information and ensuring understanding for this particular group.Whereas, Umurungi et al.'s photovoice project (2014) encountered difficulties in obtaining written consent from girls without parents or legal caregivers.As a resolution, the researchers obtained consent from the Centre administrator after informing the girls about their rights.Nonetheless, due to illiteracy, some participants could not provide written consent.Overall, the process of obtaining informed consent requires careful attention and tailored approaches to address the specific needs and circumstances of the participants involved.
Participant Safety and Disclosure is of utmost importance in photovoice projects, as it entails protecting participants from stigma, re-traumatization, and potential harm while empowering them to maintain control over their images and stories.For example, a study implemented restrictions on photographing illicit activities or unsafe spaces (Salerno Valdez et al. 2019), Another study by Teti et al. (2012Teti et al. ( , 2018) ) provided guidance on appropriate photography to avoid capturing illegal activities, and Kennedy et al. (2016) prohibited the exhibition of photographs involving minors or illegal activities.Additionally, Lofton et al. (2020) prioritized emotional support by including a psychiatric nurse in their team to ensure participant well-being.
Privacy and Confidentiality emerges as significant ethical concerns in our review, following Informed Consent.Protecting participants' privacy was crucial to ensure 1 3 Asian Bioethics Review (2024) 16:109-129 their safety, as mentioned by Smith et al. (2023) who taught participants about confidentiality when photographing others.Measures such as conducting interviews in enclosed spaces, as done by Drainoni et al. (2019), and opting for individual dialogue sessions instead of group settings, as practiced by Desyllas (2013), further safeguarded privacy.Forge et al. (2018) guided participants on securely uploading photographs to a dedicated email account, while Christensen et al. (2020) emphasized shared ownership of data with participants.However, few papers addressed privacy during data collection and dissemination, as seen in Lennon-Dearing and Hirschi (2019) where confidentiality measures during photo display were unclear.To protect the confidentiality, pseudonyms were used in recordings, analysis, reporting, and public exhibitions, and identifiable features were blurred, as demonstrated by some studies (Daniels et al. 2017;Kimera et al. 2020).Additionally, respecting the privacy of those being photographed, not just the participants, was highlighted by Jacobs and Harley (2014), urging researchers to avoid assumptions about personal space or belongings in marginalized communities, even in impoverished contexts.
Misrepresentation was a notable concern addressed in the studies, particularly in relation to the sampling method used to recruit participants.There was a study that recruited their participants solely through case managers at local HIV service organizations, which may have introduced a potential source of bias and misrepresentation (Lennon-Dearing and Hirschi 2019).Desyllas (2013) also highlighted the importance of employing multiple recruitment methods to mitigate this issue.To address misrepresentation, Salerno Valdez et al. (2019) conducted member-checking activities to validate findings and ensure an accurate representation of the youth researchers' perspectives.Jacobs and Harley (2014) emphasized the involvement of participants in the photography selection process as another means to prevent misrepresentation.
Moreover, Power Dynamics was also a significant ethical concern in photovoice projects, particularly due to the involvement of marginalized populations and the potential for researchers to hold a position of perceived superiority.To address this, strategies were implemented, such as involving participants in the research process to ensure their equal participation and decision-making, as advocated by Christensen et al. (2020) and Barlow and Hurlock (2013).Teti et al. (2012Teti et al. ( , 2018) ) highlighted the risk of researchers exerting excessive control and undervaluing participant input for personal gain, while also acknowledging the influence of power differentials based on race/ethnicity, socioeconomic status, and HIV status.Maintaining transparency about the researchers' roles in data collection and analysis, as demonstrated by Kennedy et al. (2016) and their team, aimed to mitigate power imbalances.
Compensation for participants was discussed in multiple studies, acknowledging the importance of valuing their time and contributions.It was emphasized to strike an appropriate balance in compensation, ensuring it was not perceived as a transactional exchange, but rather as a gesture of appreciation for their involvement.Monetary compensation was provided in studies by Forge et al. (2018), Hergenrather et al. (2006), Barlow andHurlock (2013), andDesyllas (2013).Lennon-Dearing and Hirschi (2019) went beyond monetary compensation by offering additional benefits such as digital cameras, photo copies, transportation vouchers, and grocery gift cards to acknowledge participants' efforts during sessions and exhibits.
The strength of this paper lies in its rigorous review process involving two independent reviewers, which effectively minimizes biases.Furthermore, it is among the pioneering papers investigating the ethical considerations surrounding photovoice.Additionally, the paper employs a robust scoping review methodology, ensuring a comprehensive synthesis of existing literature by incorporating all relevant sources.It is worth noting that the paper includes a summary of findings derived from the existing literature, offering valuable insights and recommendations for future photovoice studies.
One potential weakness of this paper is that the search terms used may not have been exhaustive, which could have resulted in the researchers overlooking potentially relevant articles.Additionally, the inclusion of only English databases might introduce bias by excluding relevant studies published in other languages.Furthermore, the exclusion of grey literature may limit the comprehensiveness of the review.Moreover, the paper's narrow focus on photovoice research projects involving marginalized communities and key populations might restrict the generalizability of the findings to other types of research projects or different populations.

Conclusion
Lastly, the ethical landscape of photovoice studies with marginalized populations highlights the importance of prioritizing participant rights, well-being, and empowerment.This study reinforces the significance of addressing key ethical concerns, including informed consent, participant safety and disclosure, privacy and confidentiality, misrepresentation, power dynamics, and compensation.Integrating technology can enhance the informed consent process by providing secure electronic platforms for participants to provide their consent, ensuring privacy and confidentiality.Additionally, technological tools can facilitate secure data storage and transmission, safeguarding participant safety and confidentiality.Fostering collaborative decisionmaking processes is crucial to mitigate power imbalances.Engaging participants as active partners in the research process not only empowers them but also reduces the risk of misrepresentation.This participatory approach promotes authenticity and inclusivity.Regarding compensation, researchers should explore alternative forms beyond monetary rewards.This can include providing access to resources, services, or opportunities that address participants' needs, thereby fostering a reciprocal relationship.By adopting these innovative approaches, researchers can navigate the ethical complexities of photovoice studies.

Fig. 1
Fig. 1 Screening and selection process for the review, PRISMA flowchart for this study

Table 1
Description of the included studies