Research That Matters (January 17 - 20, 2008)
|Saturday, January 19, 2008: 4:00 PM-5:45 PM|
|Blue Room (Omni Shoreham)|
|[RD/M] Ethical Challenges and Responsibilities When Conducting Research with Vulnerable Populations|
|Speakers/Presenters:||Cassandra Simmel, PhD, Rutgers University|
Mary Bruce Webb, PhD, Administration for Children and Families, US DHHS
Sally Flanzer, PhD, Agency for Healthcare Research and Quality, US DHHS
Sandra Barrueco, PhD, The Catholic University of America
In the past decade, research with vulnerable populations has grown in both comprehensiveness and complexity. Within social science research, there has been an increase in the usage of rigorous methodological procedures and in the execution of nationwide longitudinal and multi-site program evaluation studies. Partnering with community-based agencies and gaining direct access to previously under-researched populations has become increasingly commonplace. While these new research efforts contain benefits for researchers, agency personnel, and practitioners, they are also accompanied by a new set of complexities and challenges that were unforeseen a decade ago. This workshop will identify these challenges, discuss researchers' responsibilities when working with vulnerable populations, provide an overview of the pertinent federal regulations, and offer a comprehensive discussion—engaging the workshop participants as well--addressing these issues.
Researchers must meet federal requirements related to human subject protections and satisfy IRBs, who may be conservative on research with vulnerable populations. Understanding the federal guidelines, their ethical roots, and how IRBs operate is essential in carrying out successful research efforts. Concurretly, vulnerable populations, unexperienced in the research process, may lack knowledge about their rights in this context. Thus, understanding how to invite participation, without being unwittingly coercive, can be a subtle and vital technique to learn. For instance, the mandated child abuse reporting requirements must be explained to families, yet such a mandate may seem exceedingly complex and frightening, particularly for families where English is not the primary language spoken or read. These are challenges but also opportunities – to establish trust with families while also meeting the requirements of the federal regulations. In a similar example, children, as specified by federal regulations, are a vulnerable population that requires special protections when participating in federally funded research. This process changes if the child is a ward of the state, and can cause confusion about whom can grant the child's participation in research. Additionally, many families who are involved with child welfare and child protective systems are vulnerable in more subtle ways – perhaps by language, literacy, or poverty. This workshop will focus on addressing the preservation of the integrity of the research process while also honoring the needs and rights of under-researched populations.
The workshop panelists will be composed of four researchers, two who are in university settings, one who conducts nationwide large-scale research projects for the U.S. Department of Health and Human Services, and one who is a Human Protections Administrator for Intramural Research at a Federal agency and serves on an IRB. All are experienced in conducting research with vulnerable children and families (e.g., Migrant Farmworkers; child welfare-involved families; and Head Start families). The workshop will be a combination of didactic presentation and discussion, punctuated with real life examples and anecdotes from the researcher panelists, as well as the workshop participants who would like to share their experiences. The workshop participants will have the opportunity to review the regulatory and theoretical underpinnings of the requirements for research with children as well as examples of the practical application of meeting these requirements.