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.     

Obtaining Informed Consent When a Profession Labels Itself as Providing Treatment for Mental Illness

Abstract

This paper examines when informed consent laws mandating explanation of the risks and benefits for proposed treatments (some talk intervention) and alternative to the proposed treatments (e.g., medications) apply to the social work profession. The reasons why an explanation of alternative treatments, including explaining medications, might be part of securing informed consent are proffered. Following this, consideration of how the task of explaining alternatives might be addressed is examined. The particular example of antidepressant medications provides a context for considering how to discuss medications as a treatment alternative. The kind of information a social worker might be obligated to possess and then impart to the client in fulfilling the task of obtaining informed consent is considered.     

Evolving Ethical Standards in the Digital Age

ABSTRACT

Ethical standards in social work have matured significantly since the formal inauguration of the profession in the late 19th century. This article traces the global evolution of ethical standards in social work, focusing especially on current challenges in the digital age. The author discusses changes over time in social workers’ understanding of ethical issues and development of conceptual frameworks and protocols for managing them. Social workers’ increasing use of digital technology poses novel and unprecedented ethical challenges pertaining to privacy, confidentiality, informed consent, professional boundaries, conflicts of interest, documentation, client abandonment, and professionalism, among others. The article outlines emerging ethical standards designed to help social workers manage ethical challenges in the digital age.     

Hiding in Plain Sight: The Significance of Recognizing What is Hidden

This case commentary considers relational psychoanalytic treatment with a marginalized, traumatized client. It illustrates the centrality of a mutually developed, psychoanalytically informed generative relationship in clinical practice with oppressed clients. Such relationships promote the freedom to think, to reflect, and to make sense of one’s experience. Treatment aims to help clients bear traumatic experiences, to deepen their subjectivity and to claim a sense of agency in their lives. Development of these capacities is especially important for work with oppressed clients since their histories and living conditions militate to strip them of their dignity, integrity and fundamental humanity. The author asserts that in this way psychoanalytically informed clinical practice promotes social justice and empowerment.     

Informed Consent: Provider Responsibilities in Psychotherapy

Abstract

When a psychotherapist and patient meet for the first time, there may be a multiplicity of assumptions on both sides about expectations and goals. This paper describes that crucial relationship and the work that must take place in order that a patient gives a relatively informed consent about the therapeutic process. Due to the many variables and unknowns, there is no such thing as an absolute informed consent in psychotherapy. A relatively informed patient, however, is one who is better prepared to enter into a therapeutic alliance. These important concepts are illustrated with case examples.     

Informed Consent Agreements: Standards of Care for Digital Social Work Practices

The inclusion of remote digital practices (e-mail, texting, blogging, social media) to deliver social work services raises unique ethical and legal challenges for client and practitioner. Competent care necessitates providing clients with information that would materially affect clients’ decisions whether to assume the risks, benefits, and conditions associated with e-practices. As standards of care for distance service provision have not been firmly established, social workers are duty bound to be well-informed about current laws, duties, and obligations including specific rules governing the practice of social work in the states where they deliver remote services. This article identifies distinct threats to privacy and confidentiality associated with e-practices and offers suggested content for a comprehensive informed consent policy.     

Confidentiality

Abstract

Confidentiality was the ethical dilemma most frequently encountered by Israeli social workers in a 1998 national survey (Linzer, Conboy and Ain, 2002). A reanalysis of survey responses found the social workers cared about preventing violations of client privacy, promoting client self-determination, and respecting client dignity, especially when challenged by: (1) public institutions' right to know, (2) limitations of protection of client communications and information, including duty to warn, (3) child and family dilemmas, (4) informed consent ambiguities, and (5) computers and technology utilization. Social workers looked to their own counsel, colleagues, and supervisor's advice and their professional code of ethics for guidance.     

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.     

What to say when...

This article supplies specific interventions and illustrative dialogue to implement a systematic approach to family therapy. This approach is comprised of five steps which are: (1) elicit concrete behavioral goals; (2) elicit information abou how the client has tried to implement these goals in the past; (3) elicit his ideas about why the behavior is occurring; (4) interpret how these ideas prevent the clients from insisting the child change his behavior; (5) undermine these ideas through appropriate questioning.     

What Is The Purpose of Neonatal Drug Testing?

Controversy over neonatal drug testing may be due to a lack of agreement on the purposes for such testing. This article examines six issues: (1) the purpose of neonatal testing; (2) the selection of infants for testing; (3) the requirement for parental consent; (4) the concept of prenatal harm; (5) the standard of conduct required of a pregnant woman; and (6) the practical application of such a standard in designing a testing policy. It is argued that maternal consent does not need to be required for testing provided that: (1) adequate drug treatment services are available for the mother and infant; and (2) test results are excluded from use in legal proceedings. If intervention, therapy and research (rather than punishment) guides a neonatal testing policy, the sporadic testing of an infant's urine for the presence of illicit substances clearly falls short of the desired goals.     

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.     

Dealing with context in logic model development: Reflections from a realist evaluation of a community health worker programme in Nigeria

Logic models (LMs) have been used in programme evaluation for over four decades. Current debate questions the ability of logic modelling techniques to incorporate contextual factors into logic models. We share experience of developing a logic model within an ongoing realist evaluation which assesses the extent to which, and under what circumstances a community health workers (CHW) programme promotes access to maternity services in Nigeria. The article contributes to logic modelling debate by: i) reflecting on how other scholars captured context during LM development in theory-driven evaluations; and ii) explaining how we explored context during logic model development for realist evaluation of the CHW programme in Nigeria. Data collection methods that informed our logic model development included documents review, email discussions and teleconferences with programme stakeholders and a technical workshop with researchers to clarify programme goals and untangle relationships among programme elements. One of the most important findings is that, rather than being an end in itself, logic model development is an essential step for identifying initial hypotheses for tentative relevant contexts, mechanisms and outcomes (CMOs) and CMO configurations of how programmes produce change. The logic model also informed development of a methodology handbook that is guiding verification and consolidation of underlying programme theories.     

Talk,Research Technology,and the Achievement of Human Subject “Status Passage”

This article draws on field notes and interviews collected during an ethnographic study of the informed‐consent process in HIV/AIDS clinical trials to examine the movement of individuals from the status designation of patient to that of human subject of research. Its theoretical starting points are Glaser and Strauss's (1971) observation of the centrality of interaction to status passage and their conceptualization of status passage as social accomplishment. Insights from conversation and technology studies are applied to show that human subject status passage is facilitated through (1) the enlistment efforts of research professionals and patients, (2) the talk of participants on informed consent and protocol‐related matters, and (3) the placement of signatures on informed‐consent documents. The analysis reveals that human subject status passage is indeterminate, negotiated, and unmarked by ceremony and cultural symbols. The implications of these findings for future studies on status passage and informed consent in human research are considered.     

Older Adolescents’ Understanding of Participant Rights in the BlackBerry Project,a Longitudinal Ambulatory Assessment Study

For a long‐term, longitudinal study that used BlackBerry smartphones for passive ambulatory assessment among older adolescents, this study focused on three areas of ethical concern: (1) adolescents’ competence to give assent; (2) understanding of confidentiality, the protection of information, and project goals; and (3) awareness of procedures and benefits, and comfort with the research design. One hundred and seventy‐eight participants were 17 and 18 years old (84 girls). Results suggested that participants freely gave consent and understood most, but not all of the informed consent information. Participants reported a high level of satisfaction. Participants showed less understanding of when their confidentiality would be broken and how data would be protected.     

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.     

Planned Change and Contract Negotiation as an Instructional Model

To facilitate integration of the concepts of a purposeful planned change process and contract negotiation as integral parts of social work practice, a teaching model was developed whereby students were asked to design and implement a change process through the use of contracts with the instructor. The student as client system established change goals appropriate to beginning practice experience, negotiated a contract to reach these goals, and engaged in a change relationship with the instructor as change agent.

The use of this teaching model gave clear indication of students' understanding and integration of the planned change process and components of contracting for actual implementation in practice efforts.     

An Integrated Human Behavior Theory

Abstract

In this article, the behavioral exchange model as derived from the work of Emerson, is presented to help the practitioner more adequately conceptualize the interaction between the clinician and the client. This model can help the clinician develop and further his/her understanding of how power differentials between the clinician and the client affect the therapeutic relationship. This model describes how clients use a cost-benefit framework to determine if treatment is worthwhile-meaning that if the client perceives the rewards of an interaction as not outweighing the costs, then the client may terminate treatment. Finally, this model can assist the clinician in constructing an integrative framework for the diverse variables reviewed in the text, and with this framework will be better equipped to influence them.     

Clinician Perspectives on Relationship,Therapeutic Strategy,and Gender Responsiveness in Child Welfare Substance Abuse Settings

There is a growing acknowledgment of client–provider relationship as a determining factor within evidence-based practice implementation. This collective case study of 20 service providers examined the approaches used by clinicians working with substance-abusing mothers involved in child welfare to shed light on their use of empirically informed, gender-specific interventions. Analyses revealed that clinicians struggle to articulate specific evidence-based frameworks, and their approach relies on an intuitively driven client–provider relationship. Clinicians report little institutional support for integration of empirically supported practices into settings where workforce stress plays a critical role, and thus rely on relationship skills to frame practice approach.     

The power of silence: Ethical dilemmas of informed consent in practice evaluation

This paper critically examines the concepts of minimal risk and informed consent when practitioners use their own case material for practice evaluation and single subject research. Two student research projects conducted as requirements of a second year masters seminar in practice evaluation are used to identify specific ethical dilemmas and practice research implications are discussed.This paper is the product of class discussions in two year long research seminars conducted in 1990–1991 and 1991–1992 as part of the second year masters program at Simmons College School of Social Work. It is important to recognize that the voices of every seminar participant and the discussions generated are represented in this paper. An earlier version of this paper was presented at the 39th Annual Program Meeting of the Council on Social Work Education, New York, March 1, 1993.     

AN ETHNOGRAPHIC STUDY OF CLIENT AND THERAPIST PERCEPTIONS OF THERAPY EFFECTIVENESS IN A UNIVERSITY-BASED TRAINING CLINIC

The purpose of this study was to explor client and therapist evaluations of direct practice in a university-based training center using an ethnographic research methodology. Client and therapist perceptions about the strengths and limitations of ethnographic practice evaluation were also analyzed. A domain analysis was performed on postsession interviews with both clients and practitioners over a 4- month period. Six core categories of client and therapist perceptions of therapy effectiveness emerged from a domain analysis: (a) changes associated with counseling, (b) important practitioner qualities, (c) effective interventions or techniques, (d) ineffective interventions or techniques, (e) recommendations for future sessions, and (f) strengths and limitations of ethnographic practice evaluation. Implications of this study for clinical practice, training, and future research are discussed.