Overview of research addressing ethical dimensions of participation in traumatic stress studies: Autonomy and beneficence

Abstract

One element of the design of human research studies is ethically informed decision-making. Key issues include the safety, costs, and benefits of participation. Historically, much of this decision-making was based on opinion rather than formal evidence. Recently, however, investigators in the traumatic stress field have begun to collect data that are relevant to these decisions. In this article, the authors focus on issues emanating from the ethical concepts of autonomy and respect for persons and beneficence and nonmaleficence, and then summarize relevant evidence from studies with trauma-exposed individuals. Discussion addresses implications of this evidence for research practice and policy, and identifies some potentially informative data collections opportunities for future trauma studies.

Assessing traumatic experiences in screening for PTSD in substance use disorder patients: What is the gain in addition to PTSD symptoms?

“…Some suggest that information about trauma is necessary for treatment planning with few adverse events when asking about trauma (McHugo et al, 2005;Larsen and Berenbaum, 2014). However, others mention ethical considerations and adverse reactions that may play a role when asking about trauma too early (Newman and Kaloupek, 2009). Patients may be unwilling to disclose traumatic experiences at the beginning of treatment, because they do not trust the interviewer, feel ashamed, or are afraid of experiencing intense emotions associated with their memories (Lisak, 1994).…”

Perceptions of Participating in Longitudinal Trauma Research among Women Exposed to Intimate Partner Abuse

“…W hile the extant literature has addressed many important questions about the costs and benefits of trauma research, several questions have yet to be addressed (see Newman & Kaloupek, 2009). For example, how is research participation perceived by individuals who do not self-select into the study on the basis of knowing the study focuses on trauma?…”

Overview of Bioethical Issues in Contemporary PTSD Treatment and Research: Considering Priorities for Future Empirical Ethics Investigation

“…The importance of understanding whether PTSD status is associated with special potential for adverse consequences from trauma-focused research participation has been underscored by fundamental research in the field (e.g., Newman and Kaloupek 2009). While a robust empirical and review literature delineates the key ethical concerns of traumafocused research among adults who have been exposed to traumatic experiences, few studies have explicitly examined the impact of such research participation among participants with an actual diagnosis of PTSD.…”

“…The issue of autonomy-as applied to trauma-focused research with individuals who have PTSD-has focused on whether such individuals may warrant special precautions in a research study and/or have impaired decision-making capacity (Newman and Kaloupek 2009;Newman, Risch, and Kassam-Adams 2006). Trauma-focused research studies that have empirically investigated the adequacy of informed consent among individuals with PTSD indicate that in general, the majority of participants report that informed consent procedures are understandable (Ruzek and Zatzick 2000).…”