Protecting Persons in Family Therapy Research: An Overview of Ethical and Regulatory Standards

Abstract

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.

Utilizing Participants’ Strengths to Reduce Risk of Harm in a Study of Family Estrangement

“…Participants might be regarded as vulnerable when personal, situational, and structural issues impact on their ability to volunteer for research without undue influence (Rogers, 2005). This is more likely to occur in emergency situations, with participants in institutional settings or undergoing medical treatments, and with disadvantaged groups, such as the poor or socially excluded (Cain et al, 2003;Rogers). Examples of recent studies in which researchers defined their participants as vulnerable include mental health service users (Tee & Lathlean, 2004), Latino adolescents and their families (Zayas, 2009), Hispanic drug users (Singer et al, 2008), and families of children with life-limiting conditions (Stevens, Lord, Proctor, Nagy, & O'Riordan, 2010).…”

“…Participants are viewed as vulnerable when they have limitations on their autonomy or voluntariness (Levine;Rogers, 2005). Mental capacity 405065Q HR21810.1177/10497323114 05065AglliasQualitative Health Research 1 University of Newcastle, Newcastle, New South Wales, Australia is a key component of autonomy, so participants with cognitive or communicative impairment might be viewed as vulnerable because of a lowered capacity to process information about the research requirements (Cain, Harkness, Smith, & Markowski, 2003). Participants might be regarded as vulnerable when personal, situational, and structural issues impact on their ability to volunteer for research without undue influence (Rogers, 2005).…”

Counterproductive Effects of Parental Consent in Research Involving LGBTTIQ Youth: International Research Ethics and a Study of a Transgender and Two-Spirit Community in Canada

“…Like its regulatory counterparts elsewhere, the U.S. Code on the Protection of Human Subjects (PHS, 2005) is rooted in biomedical research but applies to all educational and social research (Cain, Harkness, Smith, & Markowski, 2003). The code requires parental consent for research involving youth under the age of consent (which varies among states), but allows Institutional Review Boards (IRBs) to waive the requirement if parents have demonstrated, for example through abuse or neglect, an inability or disinclination to protect the child ( ¶408[c]), provided appropriate measures are taken to provide alternate protection ( ¶46.408[c]).…”

Lived Experiences of Adult Children Who Have a Parent Diagnosed with Parkinsons Disease

“…Consent was needed from both parents of the adult child participant, since some of the demographic data that was gathered, and questions asked during the interview, pertained to information about both parents. According to Cain, Harkness, Smith, and Markowski (2003) it is important that, when collecting information about a family, that all of its members be considered secondary subjects.…”