Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

4
Bioethics Meets the Barrio: Community-Based Research Involving Children

Molly Martin and John Lantos

The last two decades have been marked by an effort to move research out of the ivory tower of academic medical centers and into the community. This move has been positive for three reasons. First, it provides a research setting that more closely mimics the real world. Second, it allows the identification of research projects that have a tangible benefit to research subjects and creates a mechanism for “closing the loop” and allowing the results of studies to get back to the people who participated in those studies. Finally, it empowers mediating institutions, such as community organizations, religious groups, or other citizens' groups, to scrutinize and revise research protocols according to their own moral priorities. In this way, protocols become more culturally appropriate and may ultimately lead to better information yields since the material is understandable and relevant to subjects.

These positive aspects of community-based participatory research have also created some controversies and challenges for research ethics. To the extent that the research setting more closely mimics the real world, it has also been messy in ways that the real world is messy. It is more difficult to conduct the sort of well-controlled clinical trials that are the hallmark of scientific validity in the community than it is on the wards of teaching hospitals. The demand that research have tangible results limits the sorts of projects that are allowable. Some projects are of scientific interest but have no direct or even indirect benefits to the participants. The acceptance of community-based alternative moral considerations raises questions about the generalizability or universality of moral principles. What if a community would allow or even encourage a research project that the IRB or the U.S. government would not? Is it ever acceptable to bend our rules to accommodate the rules of others? Can they be right and we wrong? These issues were illustrated nicely, recently, by a controversy that arose over a proposal that we submitted to our IRB describing a project that involved collaboration with community organizations.

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