Ethical and Regulatory Considerations for Using Social Media Platforms to Locate and Track Research Participants

As social media becomes increasingly popular, human subjects researchers are able to use these platforms to locate, track, and communicate with study participants, thereby increasing participant retention and the generalizability and validity of research. The use of social media; however, raises novel ethical and regulatory issues that have received limited attention in the literature and federal regulations. We review research ethics and regulations and outline the implications for maintaining participant privacy, respecting participant autonomy, and promoting researcher transparency when using social media to locate and track participants. We offer a rubric that can be used in future studies to determine ethical and regulation-consistent use of social media platforms and illustrate the rubric using our study team’s experience with Facebook. We also offer recommendations for both researchers and institutional review boards that emphasize the importance of well-described procedures for social media use as part of informed consent.     

Complicating Narratives: Defining and Deconstructing Ethical Challenges in Community Psychology

In this concluding essay, we review the case studies presented in this Special Issue and examine whether community psychology has a distinctive approach to defining and resolving the core ethical canons of the Belmont Report (1979): Respect for Persons, Beneficence, and Justice. For two of these Principles—Respect for Persons and Beneficence—community psychologists elaborate upon and extend their definitions to consider their meaning in community‐based, social justice‐oriented research. The field's approach to Respect for Persons is multilevel in nature; in addition to respecting individuals and their diverse identities, we also have obligations to respect our community partnerships, the communities with whom we work, and the populations and cultures represented in our work. Similarly, for community psychologists, Beneficence is a multilevel construct that considers risks and benefits at the group, community, and cultural levels of analysis. With respect to Justice, community psychologists’ views of our ethical responsibilities are qualitatively different in meaning from the original Belmont Report and from disciplinary‐specific interpretations of this principle in ethical guidance documents from psychology, sociology, and evaluation. Our valuing of social change demands that we contribute to individual and group empowerment and liberation, and in so doing, that we avoid collusion with oppressive systems. Thus, we define our ethical responsibilities for promoting Justice as more action‐oriented than do other disciplines. The essay closes with an exploration of future directions for developing a comprehensive ethical framework for community psychology.     

Photo-Elicitation Interviews with Vulnerable Populations: Practical and Ethical Considerations

Photo-elicitation is a qualitative interview technique where researchers solicit responses, reactions, and insights from participants by using photographs or other images as stimuli. Images can be researcher-generated or participant-generated and each has particular benefits and challenges. Though not new, the use of images within criminology is an underused technique. In this paper we advocate the use of photo-elicitation techniques suggesting that they offer a powerful addition to standard data collection and presentation techniques. In making our case, we draw on our experiences from an 18-month long photo-ethnography of people living in rural Alabama who use methamphetamine. The ethnography consisted of formal interviews and informal observations with 52 participants and photography of 29 of them. While we draw on our overall experiences from the project we focus specifically on the photographs generated by, and taken of, one key participant—Alice. We demonstrate the benefits and challenges of using photo elicitation interviews with vulnerable individuals such as Alice, by considering themes such as representation, empowerment and emotionality. Additionally, we highlight the practical and ethical issues that confront researchers who incorporate the visual into their research.     

Socially Valued Roles,Self‐Determination,and Community Participation among Individuals Living with Serious Mental Illnesses

Decades after deinstitutionalization, individuals living with serious mental illnesses remain isolated, socially disengaged, and devalued members of communities. Burgeoning research and services need conceptual clarity to improve such social conditions. This qualitative inquiry used grounded theory and participatory approaches to conduct an in‐depth exploration of community participation for individuals living with serious mental illnesses based on key stakeholder perspectives (n = 45). Results revealed that community participation is a multifaceted construct with layers of meaning for individuals living with serious mental illnesses. Overarching themes are contextualized in Self‐Determination Theory and presented with deidentified illustrations. Implications for services, research, and policy are discussed.     

Reducing Disparities in Cancer Screening and Prevention through Community‐Based Participatory Research Partnerships with Local Libraries: A Comprehensive Dynamic Trial

Reduction of cancer‐related disparities requires strategies that link medically underserved communities to preventive care. In this community‐based participatory research project, a public library system brought together stakeholders to plan and undertake programs to address cancer screening and risk behavior. This study was implemented over 48 months in 20 large urban neighborhoods, selected to reach diverse communities disconnected from care. In each neighborhood, Cancer Action Councils were organized to conduct a comprehensive dynamic trial, an iterative process of program planning, implementation and evaluation. This process was phased into neighborhoods in random, stepped‐wedge sequence. Population‐level outcomes included self‐reported screening adherence and smoking cessation, based on street intercept interviews. Event‐history regressions (n = 9374) demonstrated that adherence outcomes were associated with program implementation, as were mediators such as awareness of screening programs and cancer information seeking. Findings varied by ethnicity, and were strongest among respondents born outside the U.S. or least engaged in care. This intervention impacted health behavior in diverse, underserved and vulnerable neighborhoods. It has been sustained as a routine library system program for several years after conclusion of grant support. In sum, participatory research with the public library system offers a flexible, scalable approach to reduce cancer health disparities.     

Negotiating Ethical Paradoxes in Conducting a Randomized Controlled Trial: Aligning Intervention Science with Participatory Values

In this article, we describe ethical tensions we have faced in the context of our work as intervention scientists, where we aim to promote social justice and change systems that impact girls involved in the juvenile legal system. These ethical tensions are, at their core, about resisting collusion with systems of control while simultaneously collaborating with them. Over the course of designing and implementing a randomized controlled trial (RCT) of an ecological advocacy intervention for girls, called ROSES, ethical paradoxes crystalized and prompted us to engage in critical reflection and action toward the aim of moving away from conducting research on legal‐system‐involved girls and moving toward a more democratic, participatory process of inquiry with girls. Our experience revealed two intertwined paradoxes that ultimately served generative purposes. First, in collaborating with legal system stakeholders, we observed a single story of girls’ pathology narrated for girls, without girls, and ultimately internalized by girls. Second, in reflecting critically on the ethical implications of our study design, it became clear that the design was grounded in a medical model of inquiry although the intervention we sought to evaluate was based, in part, on resistance to the medical model. We describe emergent ethical tensions and the solutions we sought, which center on creating counternarratives and counterspaces that leverage, extend, and disrupt our existing RCT. We detail these solutions, focusing on how we restructured our research team to enhance structural competence, shifted the subject of inquiry to include the systems in which youth are embedded, and created new opportunities for former research participants to become co‐researchers through formal roles on an advisory board.     

A comparison of the risk‐taking behaviors of prisoners and non‐prisoners

Do prisoners and non‐prisoners differ in their risk‐taking behavior and the domains where they take risks? Surprisingly little psychological research has addressed these questions, despite the well‐established paradigms and extensive literature on risk taking among non‐prison populations. To fill this gap, we used the Domain‐Specific Risk‐Taking Scale to compare 75 male prisoners' and 75 male non‐prisoners' risk‐taking behavior, risk perception, and risk benefit in five domains (ethical, financial, health, recreational, and social). Our results show that prisoners and non‐prisoners did not differ in their risk‐taking behavior in the ethical, financial, recreational, or social domains. In the health domain, however, prisoners exhibited significantly higher risk‐taking tendencies. With regard to risk perception, prisoners perceived activities as significantly more risky than non‐prisoners, aside from the financial domain where non‐prisoners reported significantly higher risk perception. In all five domains, prisoners perceived risk‐taking activities as offering fewer benefits compared to the non‐prisoner sample. Our results also indicate that risk‐taking activities are better predicted by the expected benefits than by risk perception for both prisoners and non‐prisoners in the recreational, financial, and ethical domains. However, for prisoners, risk taking in the social domain increased with level of perceived benefit. In the health domain, prisoners' risk taking decreased with increasing level of perceived risk, whereas for non‐prisoners, perceived benefits, but not risk perception, predicted risk taking. Copyright © 2010 John Wiley & Sons, Ltd.     

Manufacturing Mistrust: Issues in the Controversy Regarding Foster Children in the Pediatric HIV/AIDS Clinical Trials

The use of foster children as subjects in the pediatric HIV/AIDS clinical trials has been the subject of media controversy, raising a range of ethical and social dimensions. Several unsettled issues and debates in research ethics underlie the controversy and the lack of consensus among professional researchers on these issues was neither adequately appreciated nor presented in media reports. These issues include (1) the tension between protecting subjects from research risk while allowing them access to the possible benefits of research; (2) the blurring of the potentially conflicting roles of investigator and physician and the boundaries between research and therapy; (3) the adequacy of Institutional Review Board oversight; and (4) trust and the relationships among physicians, investigators and industry. The media controversy about the pediatric HIV/AIDS clinical trials can be seen as a means of “manufacturing mistrust” in health care, research and social services that have not always met the needs and expectations of the public. In an era of emerging infections, it is critical to the public’s health that people understand the role of rigorous and ethical research in the development of safe and effective care. Investigators, journalists and the public need to become knowledgeable about major ethical issues in the conduct of research in order to engage in dialogue about balancing research risks and benefits and to be able to distinguish fact from distortion in an era of multiple and rapid transmission of information.     

Ensuring Community Participation During Program Planning: Lessons Learned During the Development of a HIV/STI Program for Young Sexual and Gender Minorities

HIV/STI incidence has shifted to a younger demographic, comprised disproportionately of gay and bisexual men, transgender women, and people of color. Recognizing the importance of community organizing and participatory engagement during the intervention planning process, we describe the steps taken to engage diverse constituents (e.g., youth and practitioners) during the development of a structural‐level HIV/STI prevention and care initiative for young sexual and gender minorities in Southeast Michigan. Our multi‐sector coalition (MFierce; Michigan Forward in Enhancing Research and Community Equity) utilized a series of community dialogues to identify, refine, and select programmatic strategies with the greatest potential. Evaluation data (N = 173) from the community dialogues highlighted constituents’ overall satisfaction with our elicitation process. Using a case study format, we describe our community dialogue approach, illustrate how these dialogues strengthened our program development, and provide recommendations that may be used in future community‐based program planning efforts.     

Community Power Structure Analysis and the Ethical Considerations of “Studying Up”

This narrative outlines our challenges in studying power and power structures within an individual‐level ethical framework. Taking a social ethics perspective, we share the story of our “sticky situation” (Campbell, 2016 ) that transpired during a multi‐year community partnership. We were asked, by our community partners, to help collect interview data without informed consent. As a team of community‐engaged university researchers, we were faced with a seemingly easy ethical situation (no consent, no research) that had unexpectedly complicated and long‐lasting consequences. This experience revealed to us how community‐engaged research and action, under a traditional ethics framework, can often work to protect those in positions of power and offer little to disrupt the status quo. Reflecting on the tension between individual and social ethics, we discuss the limitations of an individual‐level framework, including the definitions for respect for persons, justice, and beneficence, on our ability as a field to understand, critique, and contribute to the dismantling of oppressive power structures.     

Researching the reintegration of formerly abducted children in northern Uganda through action research: Experiences and reflections

This paper presents experiences and reflections on the use of a participatory research methodology under the difficult conditions of a war situation in northern Uganda. We draw from two complimentary approaches in action research to explain our methodology while doing research on the reintegration of formerly abducted children. First, the experience oriented approach, which emphasizes the need to articulate experience as a basis for learning and knowledge. Second, the exemplary participatory approach which highlights the importance of enhancing empowerment and the need to find solutions for social problems. We find these two approaches useful for doing action research in a conflict area because of their emphasis on experience and empowerment respectively. In our research, experience is important because of the children's encounter with the Lord's Resistance Army (LRA) rebels that both needs to be understood and justifies reintegration. On the otherhand, empowerment is important for our assumption that the children's experience and encounter with the LRA has disempowering effects on them. We demonstrate the use of the approaches in our research by enhancing participation, balancing power relations and being aware of ethical issues while at the same time attempting to make the research valid inspite of the challenges. Copyright © 2010 John Wiley & Sons, Ltd.     

Picturing the Wheatbelt: Exploring and Expressing Place Identity Through Photography

Community arts and cultural development is a process that builds on and responds to the aspirations and needs of communities through creative means. It is participatory and inclusive, and uses multiple modes of representation to produce local knowledge. ‘Voices’ used photography and photo elicitation as the medium for exploring and expressing sense of place among Aboriginal and non‐Indigenous children, young people and adults in four rural towns. An analysis of data generated by the project shows the diverse images that people chose to capture and the different meanings they afforded to their pictures. These meanings reflected individual and collective constructions of place, based on positive experiences and emotions tied to the natural environment and features of the built environment. We discuss community arts and cultural development practice with reference to creative visual methodologies and suggest that it is an approach that can contribute to community psychology’s empowerment agenda.     

Social Media in Disaster Risk Reduction and Crisis Management

This paper reviews the actual and potential use of social media in emergency, disaster and crisis situations. This is a field that has generated intense interest. It is characterised by a burgeoning but small and very recent literature. In the emergencies field, social media (blogs, messaging, sites such as Facebook, wikis and so on) are used in seven different ways: listening to public debate, monitoring situations, extending emergency response and management, crowd-sourcing and collaborative development, creating social cohesion, furthering causes (including charitable donation) and enhancing research. Appreciation of the positive side of social media is balanced by their potential for negative developments, such as disseminating rumours, undermining authority and promoting terrorist acts. This leads to an examination of the ethics of social media usage in crisis situations. Despite some clearly identifiable risks, for example regarding the violation of privacy, it appears that public consensus on ethics will tend to override unscrupulous attempts to subvert the media. Moreover, social media are a robust means of exposing corruption and malpractice. In synthesis, the widespread adoption and use of social media by members of the public throughout the world heralds a new age in which it is imperative that emergency managers adapt their working practices to the challenge and potential of this development. At the same time, they must heed the ethical warnings and ensure that social media are not abused or misused when crises and emergencies occur.     

Therapist + Social Media = Mental health influencer? Considering the research focusing upon key ethical issues around the use of social media by therapists

Current ethical guidelines for therapists who make use of social media are very limited. As a consequence, they leave much open to interpretation by professionals, an openness that may place the public and professionals at risk. This is particularly of note as therapists are increasingly making use of social media and many professionals are taking on roles as mental health influencers, both purposefully and without realising. Such developments raise many important ethical issues including considerations around influencer competency, integrity, the maintenance of confidentiality and risk management. These issues are briefly discussed in this paper alongside related current research focusing upon them. It is concluded that, despite the existence of ethical guidelines focusing upon social media use by therapists, current research suggests that therapists are not consistently following these guidelines. Moreover, it is argued that researchers and professional bodies, and their associated good practice guidelines, need to keep abreast of new developments to account for changes in social media usage.     

Predicting domain‐specific risk taking with the HEXACO personality structure

Although risk taking traditionally has been viewed as a unitary, stable individual difference variable, emerging evidence in behavioral decision‐making research suggests that risk taking is a domain‐specific construct. Utilizing a psychological risk‐return framework that regresses risk taking on the perceived benefits and perceived riskiness of an activity (Weber & Milliman, 1997 ), this study examined the relations between risk attitude and broad personality dimensions using the new HEXACO personality framework (Lee & Ashton, 2004 ) across four risk domains. This personality framework, which has been replicated in lexical studies in over 12 natural languages, assess personality over six broad personality dimensions, as opposed to the traditional Five‐Factor Model, or “Big Five.” Through path analysis, we regressed risk taking in four separate domains on risk perceptions, perceived benefits, and the six HEXACO dimensions. Across all risk domains, we found that the emotionality dimension was associated with heightened risk perceptions and high conscientiousness was associated with less perceived benefits. We also report several unique patterns of domain‐specific relations between the HEXACO dimensions and risk attitude. Specifically, openness was associated with risk taking and perceived benefits for social and recreational risks, whereas lower honesty/humility was associated with greater health/safety and ethical risk taking. These findings extend our understanding of how individuals approach risk across a variety of contexts, and further highlight the utility of honesty/humility, a dimension not recovered in Big Five models, in individual differences research. Copyright © 2010 John Wiley & Sons, Ltd.     

With a Spirit that Understands: Reflections on a Long‐term Community Science Initiative to End Suicide in Alaska

This retrospective analysis of a long‐term community‐based participatory research (CBPR) process spans over two decades of work with Alaska Native communities. A call to action from Alaska Native leadership to create more effective strategies to prevent and treat youth suicide and alcohol misuse risk initiated a response from university researchers. This CBPR process transformed into a collaborative effort to indigenously drive and develop solutions through research. The People Awakening project started our team on this translational and transformational pathway through community intervention science in the Central Yup'ik region of Alaska. We examine more deeply the major episodes and their successes and struggles in maintaining a long‐term research relationship between university researchers and members of Yup'ik Alaska Native communities. We explore ways that our CBPR relationship has involved negotiation and engagement with power and praxis, to deepen and focus attention to knowledge systems and relational elements. This paper examines these deeper, transformative elements of our CBPR relationship that spans histories, cultures, and systems. Our discussion shares vignettes from academic and community perspectives to describe process in a unique collaboration, reaching to sometimes touch upon rare ground in emotions, tensions, and triumphs over the course of a dozen grants and twice as many years. We conclude by noting how there are points where, in a long‐term CBPR relationship, transition out of emergence into coalescing and transformation can occur.     

Ethical Considerations when Employing Fake Identities in Online Social Networks for Research

Online social networks (OSNs) have rapidly become a prominent and widely used service, offering a wealth of personal and sensitive information with significant security and privacy implications. Hence, OSNs are also an important—and popular—subject for research. To perform research based on real-life evidence, however, researchers may need to access OSN data, such as texts and files uploaded by users and connections among users. This raises significant ethical problems. Currently, there are no clear ethical guidelines, and researchers may end up (unintentionally) performing ethically questionable research, sometimes even when more ethical research alternatives exist. For example, several studies have employed “fake identities” to collect data from OSNs, but fake identities may be used for attacks and are considered a security issue. Is it legitimate to use fake identities for studying OSNs or for collecting OSN data for research? We present a taxonomy of the ethical challenges facing researchers of OSNs and compare different approaches. We demonstrate how ethical considerations have been taken into account in previous studies that used fake identities. In addition, several possible approaches are offered to reduce or avoid ethical misconducts. We hope this work will stimulate the development and use of ethical practices and methods in the research of online social networks.     

How Readability Shapes Social Media Engagement

We suggest that text readability plays an important role in driving consumer engagement on social media. Consistent with a processing fluency account, we find that easy‐to‐read posts are more liked, commented on, and shared on social media. We analyze over 4,000 Facebook posts from Humans of New York, a popular photography blog on social media, over a 3‐year period to see how readability shapes social media engagement. The results hold when controlling for photo features, story valence, and other content‐related characteristics. Experimental findings further demonstrate the causal impact of readability and the processing fluency mechanism in the context of a fictitious brand community. This research articulates the impact of processing fluency on brief word‐of‐mouth transmissions in the real world while empirically demonstrating that readability as a message feature matters. It also extends the impact of processing fluency to a novel behavioral outcome: commenting and sharing actions.     

The Ethical Implications of Social Media: Issues and Recommendations For Clinical Practice

The Internet and electronic communication technologies have taken the psychological field by storm. From the innovations of new web interventions for easier access to care to the increased ease of client scheduling and communication, these developments have greatly advanced mental health care. However, these advantages are also laced with ethical implications that warrant attention. Without judicious consideration, social media use by psychotherapists can lead to inadvertent self-disclosures to clients that risk damaging the therapeutic alliance, interfering with therapeutic processes, and placing both the client and clinician at risk. A better understanding of the ethical implications of social media use is warranted so that guidelines for appropriate use can be developed and implemented. This article highlights the potential risks associated with social media use by psychotherapists and, in absence of formalized guidelines, offers recommendations for best practices.     

Housing First and Photovoice: Transforming Lives,Communities, and Systems

This article presents findings from a community‐based participatory evaluation of a Housing First program on the Island of O'ahu. In this study, clients in a Housing First program used Photovoice to evaluate the program and to advocate for progressive housing policies. Written together by members of the Housing First Photovoice group, this collaborative article describes the outcomes from both the Housing First program and the Photovoice project and demonstrates the ways in which participatory program evaluations can interact with client‐driven programs like Housing First to produce a cumulative, transformative impact. Findings suggest that community psychologists hoping to re‐engage with community mental health systems through enacting transformative change should consider taking a community‐based participatory approach to program evaluation because increased client voice in community mental health programs and their evaluations can have far‐reaching, transformative impacts for research, practice, and policy.