September 8-9, 2004
Lynda Erinoff, Ph.D., ERB/DESPR
Meeting Purpose and Intent:
Suicide researchers conducting non-intervention community-based studies have expressed concern that a lack of guidance about legal and ethical issues relating to such research has become a barrier to research in this area. NIMH has developed guidance for suicide researchers conducting intervention research, but there are issues unique to non-intervention studies. Research on child abuse and violence share some of the legal and ethical dilemmas that face suicide research such as confidentiality, mandatory reporting, emergency intervention, referral to intervention, and liability issues so they were included in this workshop.
This workshop brought together experts in the fields of law and ethics and social science researchers using different methodologies to conduct studies in a variety of community settings. Participants were asked to consider whether guidance could be developed for researchers conducting non-intervention studies of behaviors such as suicide, child abuse, and violence. Such non-intervention studies are designed to understand the prevalence, risk factors, and consequences in a population in order to provide the data necessary for developing appropriate prevention and intervention strategies. Because these non-intervention studies are public health studies, there was discussion of how the emerging fields of public health ethics and public health law may provide a better framework than the bioethics framework used to guide clinical investigation. Among the issues that were discussed were: confidentiality, mandatory reporting, emergency intervention, referral to intervention, and liability issues.
Brief Discussion of Meeting Outcome: The workshop began with presentations designed to frame the issues for further discussion. These were followed by presentations by researchers who discussed how they had dealt with ethical, moral, and/or legal issues encountered during the course of their studies.
Celia Fisher, Ph.D., Center for Ethics, Fordham University, provided an overview of ethical issues as they relate to the specific research contexts that were to be presented later in the day.
Lance Gable, J.D., M.P.H., Center for Law and the PublicŐs Health, Georgetown University Law Center, presented on public health law and public health ethics.
Edward Mulvey, Ph.D., Dept. of Psychiatry, University of Pittsburgh, discussed protections for subjects, third parties, and staff based on his experiences in conducting research on violence, some of which were large-scale collaborative studies involving research sites in more than one state.
David Buchanan, Ph.D., National Cancer Institute, presented on ethical issues that arise in doing research with drug abusers.
In his role as discussant, Steve Behnke, J.D., Ph.D., American Psychological Association, raised four questions: 1) What are the benefits of nonintervention research for subjects? 2) How does public health ethics force us to rethink our theory? 3) What is the relationship between ethics and law? and 4) What does non-intervention research tell us about compromised autonomy?
James Anthony, Ph.D., Dept. of Epidemiology, Michigan State University, was also a discussant, and he emphasized that there is neither a common vocabulary nor a common framework for analyzing ethical issues.
In his role as discussant, James Wines, M.D., McLean Hospital, amplified on Dr. FisherŐs discussion of the problems when researchers have dual roles, i.e., service provider and researcher or clinician and researcher.
Dean Kilpatrick, Ph.D., Dept. Psychiatry/Behavioral Sciences, Medical University of South Carolina, raised the issue of whether it is ethical not to conduct further studies, given that we donŐt know all we need to know about child abuse, suicide, and violence necessary to implement effective prevention, treatment, and public policy.
James Anthony, Michigan State, described a work-in Đprogress, the Longitudinal Surveillance Engine (LSE), which will allow data gathering from different samples and randomization of intervention delivery and incentive conditions.
Arlene Stiffman, Ph.D., Washington University School of Social work, described a study she had conducted with American Indian Youth, which illustrated the many pressures that researchers feel in trying to balance issues such as human subjects concerns and the need to protect adolescent participants and their families, legal reporting requirements, confidentiality, and issues specific to conducting studies in a tribal setting.
James Wines, Jr., M.D., Alcohol and Drug Abuse Research Center, McLean Hospital, discussed conducting suicide research with clinical populations and the special issues encountered by the physician researcher.
Rumi Kato Price, Ph.D., Dept. of Psychiatry, Washington University, described a natural history study of Vietnam Veterans that has been ongoing since 1971. Dr. Price is using this cohort to study the relationship between drug abuse, PTSD, and suicidality.
Dr. Mulvey's second presentation focused on case reports (vignettes) from his research with violent, mentally ill subjects. He described the importance of giving people who need help the name of a specific person at a specific agency.
Eloise Dunlap, Ph.D., National Development and Research Institutes, described legal, ethical, professional, and moral issues that have arisen in her ethnographic studies with poor, inner city African-American households.
Catherine Cerulli, J.D., Ph.D., Dept. of Psychiatry, University of Rochester, described her former life as a prosecutor working on child abuse and domestic violence cases when she did not have a sufficient social science research base to bring to bear in cases where the statutory law was not adequate.
Wrap up discussions focused on recapping issues that had been raised during the course of the meeting.
Expected Follow-up: Participants, led by Lance Gable, Celia Fisher, and David Buchanan agreed to develop presentations and a book proposal that would highlight best practices and include chapters by workshop participants.
Brief Description of Resulting Publications: APA books has accepted a book proposal put forward by David Buchanan, Lance Gable, and Celia Fisher.
Participant list (PDF Format, 900k)
Agenda (PDF Format, 840k)