Community based participatory research ethics

John Lunstroth

A prominent proponent of community based participatory research describes it as follows:

“I am struggling to pin down how community-based participatory research differs from traditional research-principled based ethics so IRB's can value what CBPR does. I am dealing with the science-humanities divide through the concept of "emancipatory information" and propose an oscillation between "shared-meaning" intersubjective research steps, and "scientific-evidence" objective (measurable) research steps throughout the research process. Sort of moving from the outsider's perspective to the insider's and the when you come out again the community gradually comes "out" (ie sees things objectively) with you.“

There may be a danger in that scenario that the community is not respected. I am worried by what appears to be the emphasis on maintaining the scientific end throughout the bonding experience. An important element of informed consent is the independence of the subject. When the kind of bonding occurs that I think the example is describing, then the independence of the subject is potentially compromised inasmuch as the bonding implies both parties equally respect the independence of the other. But since the scientists are working for their ends, the question of whether the friendship is put to the use of the scientific end, or is it respected for its own sake? If there is the possibility the friendship is subordinate to the scientific end, then ethical questions surround the formation of the friendship, assuming friendship is a value in its own right, and is a space that is relatively free of larger intentions. That is, is the friendship instrumentalized in this scenario? I do not know enough about the project to say, but that is my concern based on the short description above. If the “friendship” was truly bilateral, then an equal possibility would be that the “friends” would be just as likely to undertake community humanistic goals as to undertake the scientific goals of the researchers. That is, the joint resources of the friendship would be truly open to both ends. I look forward to learning more about the social dynamic contemplated by the abbreviated description above.

To me the solution, not possible at the moment, would involve at minimum advocates for individual and collective subjects who are trained in the sociology and ethics of medicine, research and public health, and who are not party to the neo-enlightenment obsession with quantitative science. Since the push-back from subjects must be both against science-as-ideology and the research enterprise, both of which are immensely powerful in their respective domains, two kinds of power in or for subjects must be developed. The first is a kind of dignity power that would arise from a significant part of the population recognizing it is a target of “science,” and establishing some kind of institution to interface with “science,” so it is not subject to the “divide and conquer” feature implicit in “informed consent.” Instead of a passive population it becomes active, recognizing its own dignity as having priority, not the ends of science. The scientific community, and science, should be recognized as tools of society, not its masters. Although this sounds strange perhaps, especially to those scientists whose hearts are in the right place, the emphasis on expert knowledge in public health and public health ethics points to the immense importance of the scientist in conceptions of social guidance in the scientific and regulatory community. Human and democratic values should dominate science-as-institution. The second is a more pragmatic and economic power. Since drug companies cannot establish intellectual property without access to human bodies, the quid pro quo for access should be commensurate with the use and profits of the data. That is, a significant percentage of drug company and other profits from the intellectual property should flow directly to the individuals/communities without which the intellectual property could not have been created. With regard to research in which no intellectual property results, the community should have some mechanism of its own to determine whether it thinks the research is worthwhile in terms of its own interests.

To put it in more philosophical terms, the metaphysics of the reductionist and quantitative sciences should not extend into human and social metaphysics. Human and social metaphysics should prioritize ideas/values of natural law, dignity, human rights and so on. Man, when considered as a locus of moral values, is irreducibly a political animal, not a biochemical or quantitative event. Although there are many reasons biochemical understanding of organisms is important, such understanding is weak in the domain of justice.

This administration has been criticized for politicizing science. By that is meant that the methods of science have not been respected. I do not mean the foregoing to intrude into the methods of science. However, inasmuch as scientists put their methods on trial, so to speak, then they are fair game. Examples readily spring to mind: peer review; non-disclosure agreements for research results; control of scientific regulatory bodies by industry; industry underwriting of academia; and so on. The methods of science are routinely distorted by the private sector for its ends, and this is socially acceptable and anticipated (e.g., the Supreme Court decision holding the FDA determination of medical device safety preempts individual claims against the device manufacturers for badly designed devices). The important question is, why is its use for political ends any different? Science and the scientific method are ideal categories, epistemological utopias. In reality, especially in the area of health, practice is far from theory. Since in our neo-liberal society science is primarily for the sake of the market, and contrary to liberal ideology only benefits the wealthy, then shouldn’t democratic social values, dignity, human rights, etc. have ethical priority when thinking about research on peoples? What that means exactly is not clear, but it would appear that standard is violated if we take a group and educate them only to the value of our purpose, without also empowering them to criticize the undertaking from an outsider’s point of view.

That begs the question of whether there is an outsider’s point of view. Is it possible to train people to see the world without the enlightenment/progressive patina of science as the best and highest way to understand the world?