Negotiating Informed Consent with Children in School‐Based Research: A Critical Review

The methods literature on research with children recognises the challenges of negotiating informed consent with this group. Special ‘child‐friendly’ techniques are advocated to overcome these challenges. We argue that, upon closer inspection, research with children foregrounds more fundamental problems with informed consent that are not easily resolved. Drawing from three ethical texts commonly consulted in our own research fields, we highlight problems of information, understanding, authority, capacity and voluntarity. We conclude that informed consent is more problematic than is generally admitted, and that researchers would benefit from more openly acknowledging its limitations.     

Consent requires a relationship: rethinking group consent and its timing in ethnographic research

ABSTRACT

Activist groups in ethnographic research re-negotiated our Ethics Committee’s expected order of securing consent before data collection, demonstrating the importance of researchers taking time to build relationships first. Although the Ethics Committee expected us to obtain group consent, the literature provides little guidance on how to do this. We developed a Memorandum of Understanding to summarize what forms of participant observation each group agreed to and how we would reciprocate. In this article, we (re)conceptualize consent, using analogies to consent in social contract theory and sexual relations to offer a critical perspective on what constitutes consent. We argue that taking time to build relationships before expecting research participants to consent and replacing informed consent with a negotiated agreement is a more ethical approach. We advocate for Ethics Committees to expand the meaning of ‘informed consent’ and review its timing, especially for ethnographic research with groups.     

Informed Consent with Children and Young People in Social Research: Is There Scope for Innovation?

Over 20 years of research has enhanced our understanding about the methodological and ethical benefits and challenges of involving children and young people in research. Concurrently, the increasing bureaucratisation of research ethics governance within UK universities has reified expectations about the methods used to gain informed consent for research participation. This paper explores how social researchers in the UK are navigating this tension and whether there is any scope for innovation through the use of technologies in how children and young people provide informed consent to take part in research. We conclude there is a need for the co‐creation of research information with children and young people and greater transparency by sharing creative solutions.     

Protecting persons in family therapy research: an overview of ethical and regulatory standards

Family therapists are expected to engage in ethical and responsible research, while maintaining rigorous ethical standards and adhering to federal regulations that require protection for research participants. We present a short historical overview of the significant events and ethical controversies leading to the formulation of current regulations in human subject research and review. Federal regulations and guidelines, including issues of informed consent, special populations, and conflict of interest are reviewed. A short list of recommendations to assist family therapists in staying abreast of contemporary research protocol is provided.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Informed Consent as Process: Problematizing Informed Consent in Organizational Ethnographies

This article examines the implications of informed consent in organizational ethnographies, where the research site is a bounded and formal institution that has its own sets of rules which govern action and membership. While there is considerable scholarship on the issue of ethics in ethnography in general, very little has been written about informed consent in organizational ethnographies where researchers often simultaneously observe managers, “studying” up according to Nadar, and employees referred to as “studying down”. Organizational researchers tend to discuss ethics in terms of obtaining informed consent for individual interviews or in terms of access to an organization as a research site. This essay examines ethical dilemmas experienced in fieldwork studying participatory work arrangements in a Mexican garment firm. By discussing practical issues of gaining access, problems of maintaining access and consent, and concerns of how gatekeeper consent affects subordinates, I problematize the practice of obtaining informed consent in organizations. I argue that thinking of informed consent as an on-going process that requires an active reflexivity on the part of the ethnographer will help researchers to navigate the ever-shifting web of power dynamics present in organizations.     

Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Researchers are required to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper reports on one research study inclusive of 12 adults with intellectual disabilities. Ethical and methodological realities of recruiting research participants and obtaining informed consent while enlisting a classic grounded theory methodology are discussed. The findings of this paper focus on building and maintaining trusting relationships with relevant gatekeepers and engaging in reasonable accommodations to support decision-making for and with adults with intellectual disabilities. This paper contributes to an understanding of how to apply for ethical approval, negotiate access to potential participants, enlist reasonable accommodations and obtain informed consent in the context of the methodological strictures of classic grounded theory methodology. Research projects need to be carefully planned making space for the development of empathic relationships with both the potential participants and also with the structures and services supports.     

Reassessing the Facebook experiment: critical thinking about the validity of Big Data research

The Facebook experiment of 2014 manipulated the contents of nearly 700,000 users’ News Feeds to induce changes in their emotions. This experiment was widely criticized on ethical grounds regarding informed consent. This controversy, however, diverted attention from a more important concern the experiment was intended to address, which is the impact of Facebook use on well-being. In this paper, I explore the well-being concerns raised by prior research and argue that the experiment does not alleviate them, owing to poor research design. As the question of Facebook's impact on well-being is of great importance, both to Facebook and to society overall, there is a pressing need for more experimental research that is both sensitive to informed consent and carefully designed to yield reliable results. In turn, the lessons of this case have implications for general issues of validity that emerge in Big Data research, now in vogue at major scientific venues.     

Mindful Ethics: Comments on Informant-Centered Practices in Sociological Research

In this article, I introduce the concept of “mindful ethics” to describe my experiences as a feminist qualitative researcher who has confronted ethical dilemmas in my sexuality research. Mindful ethics is informed theoretically by mindful inquiry, grounded theory, ethics in practice, and ethically important moments. Mindful ethics has been useful in dealing with ethical considerations throughout all stages of my sexuality research. Shifting my attention to the takenfor-granted social contexts and circumstances surrounding informants’ life experiences has helped me deal with ethical concerns that otherwise may have resulted in harm to informants.     

Critical issues on informed consent in Africa

Biomedical research has made tremendous advances during the last decade in improving human health and well being. In spite of these advances, research has encountered serious emerging challenges as it moves across boarders and confronts different societies with different cultural practices, beliefs, moral thoughts and different values. A pervasive and perplexing issue affecting the current advances in research is the perception that research might end up exploiting populations unless it is conducted in the context of a strong ethical framework. Furthermore, informed consent has increasingly become a thorny area for researchers when considering what should be done when introducing the process into a community, especially if the process might destroy the traditional value system and customs of the community. In this paper, I argue that community consent is an unethical process which should be subverted for community dialogue and community education in research in Africa.     

The Ethics of Research With Men who Have Learning Disabilities and Abusive Sexual Behaviour: a minefield in a vacuum

In the wake of the recent awareness of the sexual abuse of people with learning disabilities is the recognition that a small number of men with learning disabilities are themselves sexually abusing. The need to understand the men's behaviour and provide effective responses is pressing yet the search for an ethical course of enquiry appears illusory. The two conflicting dilemmas which make this task so difficult are whether the men's learning disabilities preclude their giving informed consent to the research process, and/or whether men who are sexually abusing have lost some rights to exclude themselves from research which is intended to prevent further abuse. This paper explores in depth these dilemmas and describes the authors' attempts to resolve them as they attempted to devise a protocol for consent to involvement in a qualitative study of men with learning disabilities who sexually abuse. Issues raised in this particular context have relevance to many other issues in learning disability services where robust ethical debate is needed, but often glossed over.     

Some Ethical and Methodological Issues in Research with People with Learning Difficulties

This paper discusses some ethical and methodological issues which arose in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as contributors to the study design. Various dilemmas were encountered-including how to gain informed consent from people with profound impairment, the risk of intrusion when conducting research in people's own homes, and the dangers of raising expectations of continuing friendship. The importance of accountability when analysing data and disseminating findings is highlighted. A Research Advisory Group, including two people with learning difficulties, was set up to give guidance on the study. Steps were taken, but not enough, to facilitate their involvement in the meetings. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for future research are drawn. These include the need to consider the potential implications of intellectual impairment for involvement in the research process.     

DTREE,The Electronic DSM-111-R

A study showing that student internet behavior differed significantly for students with high scores on a test of depression is thought to be the first to consider the relationship between internet use and depression that focuses on patterns of online behavior rather than content. Study findings have the potential for use in the human services as a way to assess and/or promote mental health. Although the data were collected anonymously with Institutional Review Board approval and participants' informed consent, objections have been raised suggesting this type of data collection represents “Big Brother” or the monitoring of individuals' behavior without their awareness as portrayed in George Orwell's famous novel, 1984. The importance of this type of research in furthering our understanding of the impact of Internet use on human behavior is emphasized. Additionally, the role of the university is stressed as a location for conducting ethical research which disseminates findings via publication to inform and spur policymakers to develop appropriate guidelines to prevent misuse of new knowledge and technology.     

Ethical Considerations and Dilemmas Before,during and after Fieldwork in Less-Democratic Contexts: some Reflections from Post-Uprising Egypt

How do we conduct ethically sound social research in less- or non-democratic settings? Here, the ‘ethical guidelines,’ or ‘codes of conduct’ outlined by our professional organizations provide some, albeit only insufficient guidance. In such contexts, issues like informed consent or the avoidance of harm to research participants have to be – based on a careful analysis of the situation on the ground – operationalized. What are, considering the particular social and political context in the field, the potential risks for interviewees and the researcher, and what can be done to eliminate or at least mitigate these risks? Reflecting on extensive fieldwork on the role of the prodemocracy movement during the Egyptian Uprising of 2011 in the wake of the so-called ‘Arab Spring,’ this study illustrates how rather abstract ethical considerations can be handled practically in an environment that is characterized by increasing levels of political repression and decreasing civil liberties. It is in such contexts that a failure to carefully consider such ethical questions entails a very real risk of endangering the livelihoods and even lives of research participants. Furthermore, it is shown that these and similar issues are not only of critical importance when designing a research project, but that they might have to be revisited and renegotiated at later stages of the research process – even after the conclusion of the data collection phase. Here, questions of data protection, anonymity of informants, and the associated ‘do no harm’ principle are particularly pertinent.     

The curious case of case study: a viewpoint

Abstract

This paper focuses on microethical issues concerning interactions in which the process of informed consent occurs. It draws on research analysing the biographies and future hopes of 15- to 17-year-old girls and boys participating in targeted youth/educational programmes in the Helsinki area. The ethical challenge explored here is how to negotiate with the young interviewees on expanding the research setting towards a longitudinal and cross-generational approach, which also means expanding the data produced on their already well-reported lives. The paper highlights the power relations between adult researcher and young research participant, the contextual nature of gaining informed consent, and the conflict involved in trying to avoid hounding an over-surveilled group while still tracking their whereabouts and revisiting them for a follow-up interview.     

Ethical Issues for Qualitative Research in On-line Communities

Recent years have witnessed a rapid growth in Internet technologies, which offer new possibilities for researching hard to reach groups. However, research guidelines, which could aid research in this new forum, have not yet been fully developed. The focus of the article will be ethical issues that may arise from using the Internet as a research tool if we are to protect and respect our participants. Questions surrounding gaining informed consent, privacy of participants and new power differentials, which may arise through interaction in an on-line forum, are raised. These are supplemented by reflections from work conducted by the authors using on-line discussion formus as method of research with people with autism.     

A Bioethics Approach to Social Work Practice With Transgender Clients

Increased advocacy for the informed consent model of transgender health care specifies that patients should be in control of access to receiving medical interventions such as hormone therapy or surgery. However, in practice, mental health clinicians, including clinical social workers, are increasingly called upon by medical providers to serve as gatekeepers for these processes. It is frequently the role of social workers to assess transgender clients’ baseline mental health and their understanding of the consequences of treatment, and to forward recommendations to medical providers regarding the readiness of patients to transition. Therefore, social workers assisting transgender clients must be aware of the ethical standards that are particularly pertinent to their work with this marginalized and oppressed population. They must also be prepared to address unique ethical dilemmas that may be especially challenging to resolve. In this article we apply the most commonly utilized bioethical framework known as Principlism to describe the ethical standards and values that are particularly important to consider when working with transgender clients, namely autonomy; beneficence; nonmaleficence; and social justice. Because clinical social workers are frequently in the position of balancing client self-determination with their role as gatekeepers, a framework for resolving resulting ethical dilemmas is described (I CARE) and applied to three case examples.     

The ethics and implications of paying participants in qualitative research

It appears that the practice of giving cash or gift vouchers to research participants is becoming increasingly common; however, this practice has received little attention from social researchers. Paying participants has implications in terms of the ethical requirement for consent and may have consequences in terms of recruitment for research projects and for the data collected. In this paper I consider how these issues arose in a research project with lone mothers and the way in which offering payments might help with gaining access to participants. I argue that the possible impact of making payments to research participants should be considered in research accounts and the possible impacts of payments should be more widely debated.     

Informed Consent in the Twenty‐First Century: What It Is,What It Isn't,and Future Challenges in Informed Consent and Shared Decision Making

Consent evolved from judge‐made law in Great Britain in 1767. The term informed consent entered the judicial lexicon in 1957. The first court case to articulate a reasonable person standard adopted by the high courts in Canada and Australia was heard in the U.S. in 1972. Today, informed consent continues to develop in four areas: (i) the court‐based doctrines of consent and informed consent in clinical care in judge‐made law; (ii) federal regulations related to research on human study participants; (iii) shared decision making adopted by care organizations and medical societies in the US, Canada, and Europe; and (iv) areas including decision analysis, discourse analysis, ethics, linguistic analysis, patient–physician communication, risk and evidence communication, and social theory. In this paper, we will focus on consent and informed consent in the first part of the twenty‐first century. We will examine a range of information and decision making frameworks from the oldest court‐established frameworks of consent and informed consent to recent conceptions of information and decision making in evidence‐based decision making and shared decision making in the patient–physician relationship. This paper is divided into three parts: I. What informed consent is, II. What informed consent isn't, and III. Future challenges in informed consent and shared decision making.     

My Auto/Ethnographic Dilemma: Who Owns the Story?

This article explores ethical issues of co-mingled data, demarcating the field and informed consent in a study researching the consequences of Christian fundamentalist ideology on the lives of “Bible Belt gays”. When what constitutes informed consent is ambiguous, how does the qualitative researcher justify her decision either to include or exclude meaningful data? To illustrate these ethical issues, I analyze four instances of co-mingled data, two featuring Christian fundamentalists and two Bible Belt gays, in which I gain theoretical insights under conditions of blurry consent, and weigh potential harm to subjects against the liberatory goals of the project.