Privacy and confidentiality in social work

Abstract

In the human services confidentiality is a central principle defining the relationship between the worker and the client. In this paper the authors argue that the human services have privileged the notion of confidentiality over the more fundamental right of privacy. They argue there is a persistent confusion between these two concepts and that privacy is an important but neglected ethical concept within human services. The authors discuss the relationship between privacy and confidentiality and identii some of the implications of the privacy concept for practice.     

Ethics and Institutional Conflict of Interest: The Research Confidentiality Controversy at Simon Fraser University

This paper describes the lengthy controversy at Simon Fraser University (SFU) over academic freedom and the ethics and law of research confidentiality that began when the Vancouver Coroner subpoenaed criminology graduate student Russel Ogden to testify at an inquest. There were two parts to the controversy. The first concerned the SFU administration's failure to mount a legal defense of Ogden's undertaking to keep absolutely confidential the identities of participants in his study of assisted suicide and euthanasia of persons with AIDS. The second concerned the threat to academic freedom created by the administration's subsequent imposition of limited confidentiality on researchers according to its Law of the Land doctrine of research ethics. We examine these controversies and the institutional conflict of interest underlying them in light of the ethical principles for research with human subjects laid out in various disciplinary ethics codes and, after the fact, by the Tri-Council Policy Statement, the research ethics code created by Canada's three federal research-granting agencies.     

Ethical Research Involving Children: Encouraging Reflexive Engagement in Research with Children and Young People

Research involving children raises complex and well‐documented ethical questions and challenges that extend far beyond the reach of formal review and governance systems, where these exist. However, researchers collectively have a wealth of knowledge and experience in applying universal ethical principles in diverse social, cultural and methodological settings, which offers much potential for understanding how ethical concerns are responded to in situ. Through extensive consultation and research, the Ethical Research Involving Children (ERIC) project, discussed in this article, has drawn on this collective knowledge in generating evidence‐based resources that highlight best practice while grounding ethical decision‐making in lived experience.     

Conducting Research with Lesbian,Gay, and Bisexual Populations: Navigating Research Ethics Board Reviews

The acceleration of research with lesbian, gay, and bisexual (LGB) populations amid existing sexual prejudice and advancing human rights leads to sometime conflicting stances between researchers and ethics boards over acceptable methodological practices. Ethics boards, charged with ensuring the safety of research participants, may engage in ostensibly protective stances regarding potential risks and informed consent that are unwittingly founded upon negative stereotypes of LGB populations. We examine four case studies that demonstrate divergent stances between researchers and ethics boards, researchers’ responses to ethics reviews and their resolution. Based on these cases, we describe themes and strategies for researchers working with LGB populations in responsibly navigating ethics board concerns.     

The Importance of Adoption for Nurturing and Enhancing the Emotional and Intellectual Potential of Children

ABSTRACT

The present review examines whether the weight of the evidence indicates that adoption is, indeed, a benefit to the child. Several comparison groups have been used. In a number of studies, in United Kingdom, U.S.A. and India amongst others, a comparison has been made of the outcome of the child in his/her adoptive family to what it would have been had that child remained in her/his biological family, or in an institutional setting. Analyzing all the results, adopted children seem to function better than institutional children or children restored to their biological family.     

Social Research and the Privacy and Participation of Children: Reflections on Researching Australian Children's Playlore

Social research into the daily activities of children is important if we are to understand how children perceive themselves in relationship to their world. Ethically managed social research that allows children to speak as informed and competent subjects is thus vital. However, research regulatory bodies may be more concerned with protecting the privacy of children than facilitating their participation in research projects. In a context where publicly funded researchers are encouraged to make their data available for reuse, the bureaucratisation of the consent and ethics processes may impinge on the conduct and benefits, and the future accessibility, of the research itself. Reflecting on the findings of the Childhood, Tradition and Change research on playlore in Australian primary schools, we argue for a more balanced approach from regulatory authorities between protection and participation in relation to low‐risk social research with children.     

Beyond anonymity: temporality and the production of knowledge in a qualitative longitudinal study

Anonymisation processes are an embedded, if contested, element of ethical research practice. Current debates, highlighting various challenges to anonymity, suggest the importance of situated ethics and negotiated solutions. However, the strategies adopted are necessarily mediated by the researcher’s epistemological positions. Longitudinal studies with their extended timeframes and intensive research relationships tend to amplify ethical dilemmas and highlight the contingency and fluidity of ethical processes. Here we explore how temporality intersects with epistemology in a qualitative longitudinal (QL) study of organisations located in a contemporary policy context. We reflect on the confidentiality and anonymity dilemmas that develop and change over time, the strategies adopted and the implications of these for the type of knowledge produced. We suggest that QL studies entail flexibility within epistemological frameworks. These issues have particular resonance and consequences for researchers in light of contemporary pressures around public scrutiny of academic performance and wider debates around public sociology.     

Privacy,data protection and emerging sciences and technologies: towards a common framework

Privacy is an important fundamental human right. It underpins human dignity and other values such as freedom of association and freedom of speech. However, privacy is being challenged in the networked society. The use of new technologies undermines this right because it facilitates the collection, storage, processing and combination of personal data by security agencies and businesses. This research note presents the background and agenda of the recently-commenced research project PRESCIENT, which aims at reconceptualizing the concept of privacy and developing means for the assessment of privacy impacts.     

Moments of Uncertainty: Ethical Considerations and Emerging Contaminants

Science on emerging environmental health threats involves numerous ethical concerns related to scientific uncertainty about conducting, interpreting, communicating, and acting upon research findings, but the connections between ethical decision making and scientific uncertainty are under‐studied in sociology. Under conditions of scientific uncertainty, researcher conduct is not fully prescribed by formal ethical codes of conduct, increasing the importance of ethical reflection by researchers, conflicts over research conduct, and reliance on informal ethical standards. This article draws on in‐depth interviews with scientists, regulators, activists, industry representatives, and fire safety experts to explore ethical considerations of moments of uncertainty using a case study of flame retardants, chemicals widely used in consumer products with potential negative health and environmental impacts. We focus on the uncertainty that arises in measuring people's exposure to these chemicals through testing of their personal environments or bodies. We identify four sources of ethical concerns relevant to scientific uncertainty: 1) choosing research questions or methods, 2) interpreting scientific results, 3) communicating results to multiple publics, and 4) applying results for policy making. This research offers lessons about professional conduct under conditions of uncertainty, ethical research practice, democratization of scientific knowledge, and science's impact on policy.     

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.     

Adoption Issues: Preparation of Psychologists and an Evaluation of the Need for Continuing Education

This study is an investigation ofthe level ofpreparation psychologists have in dealing with adoption issues and an assessment of the need for further education in treating triad members. A questionnaire was mailed to 497psychologists randomly selectedfrom the National Register of Health Service Providers in Psychology who received doctoral degrees between the years of 1990 and 1996. Two hundred and ten psychologists, all ofwhom were currently treating clients, participated in the study. Psychologists completed a Likert rating of their sense of preparation to treat triad members. The largest group (51%) rated themselves as “Somewhat prepared,” with the second largest group (23%) rating themselves as “Not very prepared.” Ninety percent reported they needed more education in adoption, and 81% reported interest in taking a continuing education course in adoption. Of the 210 participants, only 67 reported taking courses that dealt with adoption as part oftheirformal education. Of those psychologists who reported taking courses that involved adoption, they averaged only 1.3 courses during their undergraduate education, and 1.5 courses during graduate education, while the remaining 143 psychologists received no education in this area. When one considers the proportion oftriad members seen clinically, this study suggests psychologists need more education and background information about the effects ofthe adoption process.     

Lying in defence of privacy: anthropological and methodological observations

This article deals with three topics: lying, privacy and anthropological research. Their complex intertwinement is analysed using fieldwork notes and through engagement with relevant literature from various disciplines. Experiences of privacy, among researchers as well as among respondents, is underexposed in the literature on social research methodology. Furthermore, lying is sometimes the only effective way to protect one’s privacy. Starting from a research experience with lying respondents in Ghana, I discuss the various circumstances and reasons that lead to lying in defence of privacy, and in particular, concerns about respect in the context of research. Next, I return to the concept of privacy and explicate cultural variations in the experience of privacy. I then look at the consequences for research ethics. The paradoxical conclusion is that lying, a discredited tool of deception, is often applied in order to uphold a widely accepted basic human necessity of life – privacy. Qualitative social researchers should take these concerns about privacy and respect into account and engage in conversations that do not threaten the security of their interlocutors.     

The Victim Advocacy and Research Group: Serving a Growing Need to Provide Rape Victims with Personal Legal Representation to Protect Privacy Rights and to Fight Gender Bias in the Criminal Justice System

The Constitutional guarantee of procedural due process, arguably the most essential principle of the American justice system, provides that no person should be deprived of their rights without, at a minimum, notice and an opportunity for a meaningful hearing. Yet the personal rights of crime victims and other third parties are often violated in criminal proceedings in the absence of even minimal respect for due process. The problem persists, in part, because the system does not provide victims with personal legal advocacy and prosecutors are neither obligated nor empowered to serve as the victim's lawyer. This lack of systematic zealous advocacy for victims produces harmful common law principles that depend on and perpetuate false and prejudicial notions about the credibility of rape victims, and women as a class. This article calls for the creation of public and privately supported lawyers for victims at both the trial and appellate levels of the criminal justice system in an effort to ensure respect for fundamental constitutional principles, and to identify and eradicate gender bias in the criminal common law.     

Adoption Research: An Assessment of Empirical Contributions to the Advancement of Adoption Practice

This article examines the current state of adoption research as it applies to each member of the adoption triad. It includes a review of the research that has focused on birth mothers and fathers in both domestic and international adoptions; adopted children, adolescents, and adults; and adoptive parents. The paper also examines the areas of research in which a paucity of studies currently exist, and suggests that although major contributions to clinical practice and policy have been made, the dialogue should continue to seek to study issues such as international adoption and the adoption of children in foster care.     

Social Work with Clients Contemplating Suicide: Complexity and Ambiguity in the Clinical, Ethical, and Legal Considerations

Social workers in agency and private practice settings often work with clients grappling with suicide, either as an acute or chronic situation. Probably more than any other clinical condition, suicide forces the practitioner to confront complex ethical, legal, and psychological questions while managing an urgent circumstance. This article attempts to illuminate the ethical and legal considerations that may arise when a client contemplates suicide. Rather than advancing one answer, we stress that in training and the workplace social workers must fully consider the complexities and ambiguities of a client's experiences as well as their own clinical, ethical, and legal obligations.     

Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die

This article focuses on research ethics in highly intimate research with possible impact on life and death. In order to stimulate an open-ended dialogue about research ethics, we reflect on four ethical challenges that came up during our research into older people with a wish to die. Drawing on our experiences, we discuss (1) the possibly confirming influence of our research on the death wish (moral experience of whether or not to disregard responsibility); (2) the suggested duty to intervene (moral experience of whether or not to compromise the person’s autonomy); (3) the researcher’s authority and power over the data (moral experience of threatening a person’s self-narrative) and (4) the dilemma of intimacy (moral experience of encountering the tragic). For guidance in addressing these challenges, we draw upon work on research ethics from phenomenological and care ethics scholars, as well as from those writing about relational ethics in health research. We suggest that being open about ethical uneasiness is important, because in most cases of a grey area, there are only open-ended answers needing an enquiring mind, rather than clear and fixed guidelines. Acknowledgement of ethical uneasiness and open-ended reflexivity are indispensable to constitute a morally good research practice.     

Many Faces of Openness in Adoption: Perspectives of Adopted Adolescents and Their Parents

Parents and adolescents (mean age, 15.7 years) from 177 adoptive families participating in the second wave of the Minnesota/Texas Adoption Research Project were interviewed about their post-adoption contact arrangements. The sample included families with no contact, stopped contact, contact without meetings, and contact with face-to-face meetings between the adolescent and birth mother. Openness arrangements were dynamic, and different openness arrangements were associated with different experiences and feelings. Adoptive families with contact reported having higher levels of satisfaction about their openness arrangements, experiencing more positive feelings about the birth mother, and possessing more factual and personal knowledge about the birth mother than did families without contact. Adolescents and adoptive mothers in the contact with meetings group reported the greatest satisfaction with their openness arrangements; those with no contact or stopped contact reported the least satisfaction with their arrangements. Participants having no contact were more likely to want the intensity of contact to increase in the future rather than stay the same. Many participants already having contact wanted it to increase in the future. Fewer than 1 percent of all participants wanted to see the intensity of contact decrease.     

Researching Sexual Revictimisation: Associated Ethical and Methodological Issues,and Possible Solutions

This paper has been inspired by the processes of preparing for ethical scrutiny and seeking ethical approval for a series of studies examining causal mechanisms that might facilitate sexual revictimisation. The focus here is on just four of the issues that arose in the context of the first study: a web‐based survey. One of the aims of the survey is to test whether victims of child sexual abuse who experienced a period of psychogenic or dissociative amnesia demonstrate an exaggerated risk for adolescent/adult sexual assault during this amnesic phase. That is, cases where survivors report ‘suddenly remembering’ in adulthood that they were abused as children, but state that prior to this ‘remembering’ they had no prior knowledge of their abuse. The study design is considered to be the first ethical issue. To enhance the methodological robustness a strategy has been employed to reduce the erroneous inclusion of currently amnesic participants in the non‐abused comparison group. Secondly, consideration is given to the likely harms and benefits that might be incurred or bestowed upon the participants. Thirdly, problems of both re‐traumatisation and vicarious traumatisation in relation to the researcher are contemplated and juxtaposed against the possibility of the facilitation of post‐traumatic growth and a personal shift towards wisdom and generativity. Finally, the survey title was originally criticised as negating ‘fully’ informed consent and a defence is therefore offered that ultimately gained ethical approval. It is hoped that these deliberations and insights may prove useful to others in planning their own research and ethics proposals.     

The Management of Confidentiality and Anonymity in Social Research

This article explores the ways in which social researchers manage issues of confidentiality and the contexts in which deliberate and accidental disclosures occur. The data are drawn from a qualitative study of social researchers’ practices in relation to informed consent. It comprised 31 individual interviews and six focus groups as well as invited email responses with researchers working with vulnerable groups or with an interest in research ethics. Researchers reported feeling compelled to break confidentiality when participants were perceived as being at risk of harm but not in cases of involvement in illegal activity. Situations in which accidental disclosures occurred were also identified. Researchers reported varying ways in which they protected the confidentiality of their participants in the dissemination of their research, including omitting data and changing key characteristics of participants. The implications of researchers’ practices on data integrity and relationships with participants are discussed.