30 May 2008

Community based participatory research - cont'd

John Lunstroth

Informed consent is a concept for an individual. But groups are recognized as more than just many individuals. They have their own identity, and the issue is how to describe a way for the group identity to consent to something. I think the concept of political health can help. The researcher must appeal to the political community for consent, not to the subject community. That implies there is a political community, which may not always be the case. If there is not, then how can consent be considered? One option is for the researchers to create a political community so it can make the kinds of decisions asked of it by the researchers. But, are researchers competent to undertake this kind of political activity? It is clear that regardless of who undertakes the political community building, the acquisition or development of a political community must not be confused with the scientific ends of the researchers. The political community, in order to be legitimate, must at least consist of value neutral ways to make community decisions. The least problematic way to accomplish the building of a political community is to have it facilitated by political workers, so there is no possibility the decision-making process is somehow influenced by the researchers.

The foregoing focus on the trees does not reveal anything about the forest of power relations. The scientific community is so ideologically, socially, institutionally, and financially powerful that subject communities may never have, on their own, the wherewithal to adequately make informed consent or its collective analogue. Well, let me correct this with a note about the misleading nature of the idea of informed consent. Informed consent is a kind of fiction we allow to stand in for real understanding. Since few subjects have scientific backgrounds, or are free from some compulsion, we have a weak standard that we say is good enough to go forward. I think especially when considered on a group basis, it is inadequate to stop any research even though in theory it is supposed to have that kind of potency. So, in most all cases researchers have access to power that subject communities will never have. At the macro-economic level few countries can withstand the commercial and scientific pressures of the drug companies. In this context it is difficult to imagine even a well-organized political community withstanding the pressure of intent researchers.

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29 May 2008

Public health or political health?

John Lunstroth

To triangulate a meaning for public health, three "public" entities that can be said to be healthy have to be identified: 1) patients, as reflected and exemplified in the doctor patient relationship; 2) populations described by epidemiologists (orthodox public health); and 3) political collectives (states, etc.). The boundary between 2 and 3 is ambiguous, and in my opinion, the source of much difficulty in pinning down a definition of public health, since the idea of a "healthy" political collective is ancient. Is the social determinants movement a political movement?

For the purposes of this blog I assume there is a conceptual break at some point, that the "health" of the populations studied by epidemiologists is not the same "health" that is postulated by political scientists. It is not the same because it is described in different terms. Epidemiological health is related primarily to medical health, whereas political health is measured in philosophical, demographic and other measures, such as whether the population can be said to be flourishing. It is wholistic, whereas epidemiological measures are in a relevant way reductionistic. Political health is demographic, whereas public health is epidemiologic. Epidemiology is a species of demography.


There is another limitation and prioritization that is important and involves the institutional distinctions between 1 and 2. Public health is in some ways a residual category (re)created by the medical profession as it, the medical profession, assumed the mantle of its social authority. Public health became all the health related disciplines that were not profitable or glamorous in some way. That is why, at least until the bioterrorism funding explosion following 9/11, public health as an institution was perpetually underfunded and considered the poor step-sister or hand-maiden of medicine. Its chiefs were all doctors, and public health students and practitioners aspired, in some cases, to be doctor-like, to have that utopian level of social authority.

The foregoing describes some features of the institution of public health as seen in and about its schools. However, where the rubber hit the road, in the state legislatures, where public health is primarily regulated, public health looked a little different. All health matters in the legislatures, whether uni- or bicameral, were first considered in the public health committees. They have different names, but their function is the same. From a regulators perspective all regulation of health construed as a medical matter is focused through one committee. Of course, insurance, and other institutions that bear on the health economy may be dealt with primarily in other committees.

From a legal perspective Larry Gostin got it right in his book Public Health Law: Power, Duty, Restraint. Public health includes medicine, and all kinds of other policy issues that have to do with medical (including mental) health. That is, as a legal matter, the social authority of medicine is a nullity. Medicine is simply another profession to regulate, another group of lobbyists to deal with, another set of interests to consider.

Public health is a comprehensive concept that ranges from biochemical models of disease to social determinants, from doctors and other health workers to policy-makers. It is everything to do with health that is not definable as political health. Public health is part of political health, but political health includes norms with which to evaluate political structures, e.g., constitutional design (and theory); fit between the government and the constitution; human rights; international law; and other concepts.

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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?

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27 May 2008

Marketing placebo for use by the public

Today experts say placebo use by a parent is deceptive and unethical. Perhaps they have never practiced "medicine" or health care. Surely, they understand placebo has been used since antiquity, and continues in use. There are three issues: 1) does placebo work? 2) is placebo use in and of itself unethical, without consideration for who uses it, because it is deceptive? 3) is placebo use by parents unethical?

1) Placebo has been used by physicians and other health workers since antiquity, and continues in use today. There is a strong argument not using placebo is unethical. One expert says: “Each and every time you give a placebo you see a dramatic response among some people and no response in others.” Of course, that is well understood. In fact, it disguises by leaving unsaid one of the reasons placebo is justified. No medicine works 100% of the time. It may give some bodily reaction most of the time, but that is not the same as a curative action. Henry Beecher, whom we know as one of the initiators of research ethics, also gave us the medical short-hand that about 1/3 of patients get better by themselves, 1/3 by medicine, and 1/3 don't get better. That is based on his early 50's paper that said about 1/3rd of cures from any intervention are not due to verum, but to the placebo effect. The research about placebo ranges from 30-40% (or more) effectiveness to it is not effective at all. As a matter of professional judgment, in which "evidence" is primarily based on the physician's experience, placebo is a valuble tool in the arsenal of tools to help people feel better. As a general matter, in short, there is no pragmatic reason not to use it. It works.

2) The deception issue in medicine is problematic. But if placebo is treated llike any other intervention, then perhaps the problems disappear. Since no medicine works all the time, some more than others, when the physician tells the patient about any medicine it would be unethical to say it works all the time. So, what is the problem with treating placebo like any intervention, all of which have a potential not to work? That is, if use of placebo is unethical because of deception, then much use of medicine is deceptive for similar reasons. Any argument about placebo must be generalized to an argument about the use of deception in medicine and the uncertainty of medical knowledge in general. No physician knows with theoretical certainty whether any substance he or she gives will work.

3) Given the foregoing, the protestations against parents using placebo for their children sound more like the familiar refrain of "only physicians (MDs) know how to treat disease, and you parents should not be mucking about with the lives of your children." Defenses of this kind are dubious on many axes.

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25 May 2008

About political.animals


This blog is about health as seen through the focal points of political theory, moral theory, theory of biology, ethics, law (international, natural), justice, history, human rights, national security, sociology and policy. I understand health to refer to a state or condition of a living thing, taking into account Aristotle's observation that "man is a political animal." The reference to a definition of "man" consciously refers to two ideas. First, ethics (or health) requires a theory of biology. We cannot discuss (as a philosophical matter) any of the foregoing subjects without knowing what a person, or other living thing, is. Are living things biochemical machines? Are they definable by the level of autonomy they have, with man at the apex of a more or less well described hierarchy of autonomy ranging beneath her from the great apes down through plants and into single-celled organisms? Or are we purely social animals, determined by socio-economic status or some other social determinant? These three determinisms dominate, mostly from a unacknowledged position of authority, the outcomes of discussions of health.

Health then, may simply be a word that has no instrinsic or unified meaning. Can it mean the same thing for a biochemical determinist as it does for a social determinist? Pragmatists use a hybrid approach, thinking of the human as the focal point of the three determinisms. However, even this position ultimately requires decisions about a theory of biology, if moral discourse is to proceed from the pragmatist's position. Moral theory cannot tolerate, in my opinion, a bifurcated essence because morality is a characteristic of a whole thing, it is values, ends, goods, or other concepts related to living things, their self-image and relationships. Biochemicals, nerve plexes and statistics cannot have moral status apart from the focal point of the living thing(s) of which they are characetistics. Since morality is about what to do in the future, it must be about things that can be said to have the capacity to contemplate the future, and make and act on decisions about what is contemplated. Living things and political organizations of living things fir the bill. If man is not a political animal, then how can we make moral sense of the world we live in?

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