Strong community collaborations are essential for designing and conducting ethical research in ethnic-minority communities, researchers emphasized at a July invitation-only conference sponsored by the Fordham University Center for Ethics Education, the National Institute of Mental Health (NIMH) and APA.
Using the points that emerged at the conference and in collaboration with health and behavior experts who were there, NIMH will begin to develop guidance on ethical issues in mental health research involving minority children, to be disseminated to investigators, institutional review boards and funding agency review panels.
In recent years, the National Institutes of Health has launched an initiative to understand and combat mental health disorders' disproportionate impact on minority populations. But the heightened research focus on ethnic minorities, while holding the promise of remedying ethnic disparities in health, also underscores the importance of developing research initiatives that are sensitive to ethnocultural variations in perceptions of risk and benefit, consent and confidentiality.
Nowhere is the need for such guidance more evident than in research with ethnic-minority children and youth, who are especially vulnerable to research procedures that don't protect their rights and welfare.
Current ethics regulations, although critical, often disregard the unique ethical challenges that scientists confront in research with diverse ethnic populations, says Fordham University psychologist and conference organizer Celia B. Fisher, PhD.
"When we place ethical consideration and respect for cultural differences at the forefront of mental health science," she says, "we are challenged to think more deeply about procedures that are in place, the adequacy of those procedures and ways to create a stronger and more socially responsible science base."
"There are many of us who believe this conference should have happened decades ago," comments Joseph E. Trimble, PhD, a conference participant and psychologist at the Radcliffe Institute for Advanced Study at Harvard University. "Ethnic-minority research has been going on for decades, and ever since the first set of [federal] ethics standards came out, they've made the erroneous assumption that all of those guidelines applied uniformly to all people."
Building community partnerships
At the July conference, participants discussed a number of ethical dilemmas in studies of child and adolescent mental health in ethnic-minority communities. They recommended that investigators, review boards and research funders take into consideration:
Different cultural conceptions of privacy, research risk and benefit, and the roles of parents and communities in permitting child and adolescent research participation.
Historical and cultural reasons for resistance to research participation.
The possibility that in poor communities, payment for research participation may be seen as coercive.
Whether ethnic-minority communities will have an opportunity to benefit from the research in which they participate.
Whether the research is likely to stigmatize individuals, families or communities.
Factors that might compromise the validity of measures used in research. For example, using arrest records as a measure of aggressive behavior among ethnic-minority youth might bias study results because such records may reflect unfairness in the criminal justice system.
These and other considerations underscore the importance of establishing ongoing collaborations with the ethnic-minority communities in which research is conducted, researchers at the July conference agreed.
"Researchers can't use the hit-and-run approach," says Trimble. "You have to establish a long-term relationship with a community in order to establish trust."
Conference organizer Kimberly Hoagwood, PhD, associate director of child and adolescent research at NIMH, agrees. "Investigators should make reasonable efforts to understand cultural expectations toward consent, assent, permission and confidentiality," she says. "This is likely to involve understanding the attitudes, values and histories within specific cultures--simple translation is not enough."
Further, Hoagwood emphasizes, community collaborations should not be a pro forma way to obtain acceptance of research protocols that have already been developed.
Developmental psychologist Ruby Takanishi, PhD, president of the Foundation for Child Development, observes that communities have grown increasingly wary of researchers, making it more difficult for investigators to gain access to ethnic-minority populations.
As a result, she says, "Slowly, we seem to be making some progress" in convincing mental health researchers of the need for such collaborations. "There seems to be much more serious attention to the more genuine involvement of community organizations and neighborhoods than I've seen before."
Just as important as community partnerships are collaborations among experts in various substantive areas of mental health research and those who are experienced in working with ethnic-minority populations, stressed many researchers at the July conference.
"Principal investigators need to be open to a feedback loop from all areas--what the participants are telling them, what the front-line data collection staff are telling them and what other, perhaps more junior researchers are telling them," says clinical and cognitive psychologist Jeffery S. Mio, PhD, of the California State Polytechnic University, Pomona. "The entire process needs to be open."