The Transcript, Part IIIMessage (2/5/97,
4:35 pm) Alex et. al. Perhaps it is just me, but I must say that I find the value matrix and concept map very obscure. I really don't think this type of meta-analysis mumbo jumbo will sit well with the scientific audience we can expect at AAAS. It is the sort of over-intellectualized social science that scientists find suspect. You should have some faith that you have chosen good speakers with particular insights and expertise. We are now at least aware of the points of view represented and can play off them as appropriate. I would suggest leaving it at that. I say all this having come from an academic background in journalism and mass communications theory. The faxed information appears to try to cram our somewhat unrelated talks into somebody's idea of communication. Others, please feel free to let me know if I'm crazy. David Message (2/5/97,
2:20 pm) David: It is not just you. I have had the same feeling after reading all of the correspondence about this meeting. I come from a biological science rather than a social science background but I agree that the audience may react negatively to too much specialized jargon and idiosyncratic thinking about these issues. I have no idea about what half of this means but I do agree that the scientific audience are likely not to appreciate it unless it is explained very carefully and simply. It is also important not to imply that all of the speakers are in any kind of agreement with all of this since I don't see any kind of consensus here. I rather think that each speaker presenting their ideas from their own point of view would be more valuable. Glen Evans Message (2/5/97,
5:00 pm) I must confess that, unlike Drs. Miklos and Evans, I found the analytic work presented in the value tree and table helpful, not confining. It's a tool I find useful for hearing again and reflecting on the points of agreement and disagreement that have already emerged in these exchanges. I like having a map where I can locate related and opposing concepts and keep track of a complicated argument. Thank you, Greg and Barry, for the work you put into this effort. It uses jargon, but isn't that a tool for any effort at careful discourse? Every science has its jargon. (The poet G. M. Hopkins put it "Every trade has its tackle and gear.") Genetic science relies on its jargon to communicate, analyze, differentiate. It seems like the same kind of stuff to me. The value tree looks like a useful taxonomy. The table looks like a useful way of analyzing the functions of different organs in a complex social organization (a market, a family, a community, a state). That's what we're trying to explore, isn't it? I have presumed that social scientists also belong to AAAS, and this won't seem to be mumbo-jumbo to them. Maybe I'm wrong about the membership of AAAS. I'm frankly mystified why you (Drs. Miklos and Evans) were so negative in your reaction to these analytic tools. I take the taxonomy of the "value tree" to be offered as a mirror of what we have articulated in our exchanges thus far. I assume it is incomplete. I see that it leaves out the ethical value of the common good (a.k.a. community, solidarity, brotherhood/sisterhood). I defined the political community as consisting of "all those whose common good is bound up in the mutual dependency and shared authority of a democracy." That is a major value that I believe needs to be explicitly addressed in devising, implementing, and evaluating public policy. The tree is also helping me think about Eric's question about whether Celeste and I really disagree about "artificial discourse" or not. You're right, Eric. Oregon Health Decisions tries to plan and structure the discourse. But, Celeste, we believe the planning (the artifice) moves it away from manipulation toward authentic expression of values in ways to be effective in health policy. I'm looking forward to an enriching discussion of the democratic process and the dangers of puppet shows passing themselves off as democracy. Regarding the table: I think this matrix is a very helpful way for us to see where we have concentrated our comments and where we might pay more attention. Right now, I don't see anything I want to add or take away. It's leading me to reflect in useful ways, I think about questions like, "How can the media be an instrument for representativeness? Accuracy? Effectiveness? How about synergy between the media and public opinion surveys (to improve representativeness and accuracy)? Or between political representativeness and "Two way" meetings (to improve effectiveness)? Thanks for helping organize my thinking in relation to the others on this panel. Mike Garland Message (2/6/97,
8:17 am) Dear colleagues: I appreciate the comments to date on the value trees etc. I share elements of reactions from both "sides" of the response curve. I found t he "reflection" offered by the summary to be interesting and useful--it provide d a good summarizing and focus device for me. On the other hand, I think it is easy to get carried away and make tools into ends-in-themselves. In other words, in this case I would hope we would be able to use the "tree" as a good focus device and a tool for thinking about overlaps and differences in positions. On the other hand, I hope we would avoid letting it take-over the discussion. Such an approach would lose the spontaneity and openness of the discussion. For example, the decision tree presumes that there is some homogeneity of position , and that everyone is located within the same discursive space, whereas a more agonistic framework would capture the tensions and disagreements. As for those, I would like to respond to Garland's thoughtful query about constructed dialogues. First, I do not know enough about how the dialogue was structured to give a full and fair assessment. Perhaps you have found a way to overcome my concerns about representativeness and the artificiality of short-term focused debate as opposed to a longer-term more organic discussion. But second, note that one of my major concerns was that those types of artificial debates (the ones with which I have been familiar) have tended to have no policy input, so they were little more than self-gratifying exercises for the participants and grant-gaining devices for the sponsors. It appears to me that you have suggested that in this case your discussions had direct policy input established. (That fits on the "efficacy" concern in the tree). That strikes me as enormously important for making these things matter. On the other hand, it also makes more crucial the issue of representativeness and long term debate. It seems that in your type of policy debate, someone decides who gets to be participants, and the discourse is localized to specific times and places. That creates serious concerns about closing out voices and long-term reflection. Of course, it is not as though current flows of public debate insure that all voices are included, but there is a potential for openness that seems lost when there must be a form al decision on who gets to be included. Furthermore, this whole process is based on the assumption that the current public policy process is grossly deficient. I know that intellectuals always say that and think that, but I wonder w hat kind of standard is being used to make such a judgment (e.g. compared to scientific journal articles public discourse is sloppy....yeah, so?). I think that books such as THE Rational Public make a good argument that there is a substantial congruence between reasonable policies and public attitudes over the long term. Moreover, I wonder what kind of epistemic authority we have to judge t he public debate process as inferior to something we can construct? Thus, I think it is desirable to augment the public debate process by encouraging greater reflectiveness and interaction among parties, but I worry about efforts to supplant open public debate with closed structured dialogues. I'm very interested in your comments about this because I understand that when it comes to some thing as technical as deciding on specific rationing standards for health care one bumps up against a basic limitation of democracy--that is not the ability t o master information by the public but rather the need for so many coordinated decisions. Enough from me. Celeste Message (2/6/97,
8:51 am) Dear Colleagues, The contributions of the symposium participants, and the comments of the Fowlers, especially Greg's submission of 4 February, have inspired today's remarks, and those that will follow over the next few days. I would appreciate responses from anyone, but particularly the Fowlers, whose function it is to set any desired boundaries, if any, to the discussion, or points on which they would like to see the discussion focused. My comments on "Decision Analytical Feedback for Virtual Conference," which just arrived this morning, have been sent separately. ONLY IN AMERICA??? One striking observation about these exchanges so far, which I should like to pose as a caveat to all, is that the discussion is much more "Americacentric" (forgive my coining of such an awkward term, but I can't find a better one) than is appropriate to the topic. The acronym HGP may have originated at NIH, but surely HUGO, the international human genome program, is to be included in our domain. Or is it the intention of the organizers to focus this meeting on the U.S. HGP and confine the discussion of policy issues and public involvement to the American scene? I surely hope not, since the fruits of the many programs included in this global effort, and their implications will surely affect the entire planet, not only the U.S. Perhaps, since all of us are Americans, this tilt is inevitable. Yet as an expatriate of sorts for most of the past 12 years, I have become acutely aware of how insufferably provincial most Americans are. The universe beyond the U.S. boundaries seems not to be even recognized by most, or at least anything that is not "American" is automatically devalued. That, sadly, seems to be part of the unconscious mindset that the American culture fosters. Keep in mind that the U.S. population is less than 5% of the worldwide human population, a fact that we must not ignore as we proceed into this extremely important issue. Mechanisms of decision making, and the extent to which public is involved, or even tolerated, vary greatly throughout the world, as does the list of priorities concerned with what we may call biotethics. The world's various publics include far more than the poles of the "U.S. taxpayers" vs. the "Third World". I, at present at least, belong to neither group, yet I am very much involved, both as a member of the greater public and as a scientist-entrepreneur who is very excited by flood of such tremendously valuable information coming from the project that is rapidly revolutionizing our approach to medical practice. The taxpayers of the EU, from which support is derived for a $ 2 million program grant in vaccine development, in which my company is involved, are just as much of a sub-public as the U.S. taxpayers. Corollary to the above, the focus by Americans (also mentioned by several of the speakers) on such issues as discrimination and insurability, and distributive justice in health care is very skewed from the perspective of a resident of Europe. I don't think it is the purpose of this forum to get into the fallout generated by a for-profit healthcare and health insurance industry that seems to be driven primarily by capitalist greed; this is a serious, uniquely American problem that sooner or later the United States will be forced to come to terms with. Perhaps the information generated by HUGO/HGP will provide an additional impetus for the political process in the U.S. to finally deal with health care reform in an effective way. At best, however, these are geographically narrow and, one hopes, short-term issues. Comments? Burke Zimmerman Message (2/6/97,
10:00 am) Sorry, but I just can't resist rising to Zimmerman's bait. Americans are provincial, but the French, for example, are not. (Truly funny in light of recent U N issues, isn't it?). The British, being colonialists and wistful masters of empire are not provincial either. While Zimmerman is surely correct that we wan t to keep an eye on the fact that we live in a global economy and that people all around the world are affected by genetic technologies, the current situation is that public discourse is organized within national boundaries. I've read enough material coming out of both Canada and Britain on HGP and related issues to feel pretty confident saying that these folks are thinking within their national policy frameworks as well. Laws are still made nationally; international "law" is tenuous where existent. Thus, policy debates must be primarily focused on national (if not state or local) issues. I truly wish that the US would resolve its insurance inanities, but I can hardly stake the future fairness of genetic medicine on that wish. Perhaps some day we will move to a fairer system, but I see no good reason for believing it will be particularly soon. In the meantime, we can't just ignore the issues of insurance etc. on the grounds that they are only relevant to 5% of the world's population (it is the 5% that we as citizens are most responsible for--not being excessively imperialistic in our world views, that is). We can't just say "well, it will be unfair, but only as long as we have this stupid insurance system, so let's not worry about this--after all it takes the sheen off our excitement over the new medical discoveries (and might negatively impact our grant budgets!)." I'm excited about the RESEARCH VALUE as PURE RESEARCH of the HGP as Zimmerman is--it's just lovely human thinking and experimentation and development. I'm even excited about the medic al improvements the HGP will encourage. However, we don't have to assume that dealing with practical and ethical problems is a threat to that excitement. Surely we are sophisticated enough to deal on two tracks at once, at least in our discussions, if not in other venues. So, my country right or wrong, when right to be kept right, when wrong to be put right...'cause I'm a citizen and I've got responsibilities...... Celeste Message (2/6/97,
12:05 pm) Whenever I see a decision tree, I am wary about what might be dropping out. Religious faith, in particular, is hard to describe in analytic pathways. It resists neat, binary disjunctures. For instance, note what the decision tree labels "MG": "Separate Values from Beliefs." It's not too far off to say that my life's work is to encourage people NOT to separate values from beliefs, and so I am a little uncomfortable with this. I may be misunderstanding the proposal on the fax, but if it is suggesting that religious people ought to clarify their values and separate them from the particularities of their religious beliefs, and only then present those values in public, I would resist the proposal. Of course, religious people often do just that, but doing so is a failure, not a virtue. Fortunately, today, many are challenging just such a banishment of religious conviction from public discourse. Whatever the costs of such banishment may be to the quality of public discourse, it is devastating to religious faith. Such sanitized values have little resemblance to the moral dimensions of faith. It may be that religious people (I am thinking primarily here of Christians, but the probably includes people of other faiths) simply mean something different by "values" than is ordinarily meant. For religious people, values are recognized, not chosen. Terms such as "good," "natural order," "disorder," "defect," "health," and "disease" are not projections of my will. These terms are linked to specific conditions of nature, and I recognize this linkage on the basis of a religious understanding of the relationship between God and nature. To ask me to separate values from belief is to ask me not to have values, but mere preferences, mere projections of will, which are not values but tastes. Values are objective, not subjective. Values are based on what is (or more precisely, on the relationship between all things and God), and not on what I like. Scientists often use terms like "defect," and when they do, they, too, think they are pointing to something in nature, something objective, and not merely expressing their tastes. In this respect science and theology agree. Ronald Cole-Turner Message (2/6/97,
4:57 pm) I suppose what is lost on me, is how all the categorizing and flow charts translate into specific "prescriptions" about how to prepare people to fruitfully and securely inhabit this "gene age" that is upon us? Doubting Dave Micklos Message (2/6/97,
11:20 pm) Esteemed Panelists! At the end of my "summary" posting of Feb. 4, I asked for "some responses to my "readings" of your early thoughts--and about the "Decision Tree and Table" which followed. Well, I got my wish! The subsequent interchange has been vigorous and--at least for me--quite helpful in providing additional focus to the "values" part of the conversation. I am thinking about using some of the information in my introductory remarks at the beginning of the Conference on the 17th. In any case, the active dialogue we have all enjoyed during the past two weeks has already served the best interests of our symposium and helped to maximize the potential outcome(s) of our individual presentations. The further input re: your critique of the value table-- reflecting Barry's and my reading of your initial remarks--could be an interesting addition to the "data." In that regard, it would be great to hear from all of you. With regard to Burke's request for some "guidance," let me say that I most certainly want all of you to speak "openly and spontaneously" (Celeste) from your respective positions. I absolutely agree that "devices" such as "trees" and "matrices" are only tools for seeing possible relationships between your various positions--and only to be used, as Mike says, "...to see where we have concentrated our comments and where we might pay more attention." David ("the Doubter"), Glen's and Ron's comments were very helpful in that regard. And, Burke, I confess that I had not thought initially about extending our discussion beyond the cultural borders of the NIH...i.e., the HGP to something more global. However, your point about HUGO is well-taken. We've heard Celeste's view. Any other thoughts? Let's keep talking. In contrast to many conferences, this one promises to contribute something really valuable to help "...stimulate an active program of public discussion of genetics issues at the grassroots level" (NIH's ELSI Program)-and to begin to meet the challenge articulated by Glen, himself, when he said: "One of our major problems as scientists is the lack of understanding of our work by the general public..." I, for one, remain deeply appreciative of the expenditure of your time and effort on behalf of this symposium. I believe that we are already gaining from the experience of working together. Greg Message (2/7/97,
3:18 am) Science Education, And Capturing The Public's Attention Dear Colleagues, The remarks of David Micklos on the importance of learning science at an early age are most germane to this symposium. In the late seventies, as the staff scientist on the House Subcommittee on Health and the Environment, who had among other duties, the thankless task of developing an appropriate congressional response to the recombinant DNA furor of that era, I have experienced all too many times the frustration of trying to educate adults in such arcane topics as the scientific basis for risk assessment, the structure and function of genes, the nature and risks of ionizing radiation, the prospects for human cloning, etc. etc. In spite of the good intentions of the members of our subcommittee, as the representatives of the public, to learn the science they should have learned in elementary and high school, they just didn't get it, no matter how many articles, experts, and visual aids they were provided with. Few of the members' aides were particularly scientifically literate either. In the end, Congress, as well as the "public interest" lobby, had to rely on the opinions of the credentialed "experts." The problem was/is, you can always find at least one such "expert" to espouse virtually any position you can think of, and certainly one to reinforce your pre-existing biases. [NOTE: I should comment here on the very successful Congressional Science Fellows program initiated by AAAS, which makes it possible for real scientists to work in members' and committee offices, and other agencies, for a period of 1-2 years. While not a substitute for universal scientific literacy, it has certainly helped to raise the level congressional competence in dealing with an increasing number of technically complex issues.] Eric mentioned a few choice ways in which the attention of the public may be captured, but 20 years ago, one of the crucial elements in escalating recombinant DNA to an issue worthy of combat readiness was an article appearing in the New York Times Magazine in 1976 entitled "New Strains of Life... and Death." by Liebe Cavalieri, a scientist with all of the right letters after his name. Full of factual errors and blood chilling scare scenarios, it alarmed many in high places. Ted Kennedy held a hearing in the autumn of 1976, in which he held up the magazine article before the witnesses and asked what we (the Congress, as the public's agent) were going to do about it. It was simply assumed that the New York Times Magazine was a credible and responsible source of information, so Cavalieri's assertions were not questioned by the scientifically unversed. The protracted battle that followed over the safety of mixing genes, let alone the ethics of doing it, was never resolved on scientific grounds and the synthesis of a coherent and responsive public policy was not possible in such a charged and highly polarized atmosphere, where nobody trusted anyone else. In fact, the most contentious issue was not safety at all but whether state and local jurisdictions should have the right to exercise "participatory democracy" by being allowed to override federal guidelines or regulations. That is, the spokespeople of several public activist organizations claimed that communities, through a simple referendum, should have the right to ban any activity (including university research programs) that they were worried about, without having to prove that it was potentially dangerous. But, eventually, in the absence of any real calamities, the issue fizzled out, the congressional attention span ran out, and both public and congressional interest faded away. Incidentally in the U.S., there are no generally accepted constitutional precedents concerning federal preemption of state and local authority -- it goes both ways depending on the issue. In the case of the HGP and HUGO, the atmosphere of public discussion so far is benign and peaceful in comparison with the reaction to the introduction of gene splicing. Perhaps it is in the way the subject(s) have been introduced. It is also rather difficult for people to imagine how the knowledge of human DNA sequences could produce some immediate scary threat, like a pandemic infection, one of the significant imaginary bogeymen of the rDNA flap. Nevertheless, the range and magnitude of possible long-term effects on the human race that might ensue on the basis of detailed knowledge of genetic structure and function of humans et al. is far greater and more profound than it ever was with just the invention of the tools with which to splice genes. I don't think that this difference in the level of "concern" reflects any improvement in the public understanding of scientific issues, and there is not a significant difference among older Europeans and Americans. In both cases it is pitifully inadequate. In Europe, the intense public reaction to the marketing of "genetically engineered" vegetables is testimony to the fact that those making policy just don't understand the scientific basis of what's going on. Here it is interesting to note that in Europe, the level of public worry over the marketing of genetically altered food varies considerably from country to country, ranging from close to zero to (in Finland, for example) to where the vast majority is opposed to the production and selling of altered tomatoes and soybeans (the Netherlands). This in part may reflect the effectiveness of publicity campaigns by the local Greenpeace organizations, but no doubt there are other factors. There is hope with regard to our children -- my daughter is getting (in the 7th grade) chemistry, physics and biology (in addition to four languages!) already at a level that should result in a lifetime respect for the workings of nature and the scientific method, and a rejection of the pseudoscience and mysticism that underpins much of today's antiscience mentality. This is standard public school curriculum. While in many ways I would like to see her back in school in the U.S., I shudder when I see what she would face in many American public school systems. There are of course exceptions, like the Bronx High School of Science, and Leon Lederman's experimental science school outside of Chicago (which is a private school, I think). There is no compelling reason why science cannot be taught properly in public schools generally, as long as the resources, including properly qualified teachers, are available. In any case, we are stuck with the present conundrum of expecting the "public," defined however you wish, and which overall never learned the language of science at an early enough age to become fluent, to be an active participant in the formulation of policies involving very complex scientific issues. I see this as a major difficulty in meaningful public participation; I hope that this problem will receive the attention it deserves at this symposium. Burke Zimmerman Message (2/7/97,
7:16 am) This is Barry Anderson, entering the discussion, although just briefly at this time. I am replying to Glen Evans' response to the decision analysis. My response at this time will, I'm afraid, be a bit piecemeal. Glen referred to the analysis as "overintellectualized social science". The origins of decision analysis are in mathematics and operations research, not the social sciences. He objected to a "meta-analysis". I fail to see what, specifically, is objectionable about meta-analyses. He said we should have "faith" in the participants. We certainly have no doubt that the participants will present their own points of view competently. The difficulty is in reconciling all the points of view - and to do so in a way that will not just satisfy scientists but also inform decision makers usefully. If we want science to impact public policy, we must include the perspective of the decision makers. Decision analysis does just that. I don't pretend that the decision analysis I presented is correct. This is something for all of us to work out. It was intended just to get us started thinking about the various presentations fit together. Apparently, it has succeeded in that! I hope that we will continue this discussion in a constructive fashion. In the spirit of the scientific method, if someone has an alternative "theory" - an alternative framework for organizing the material to be presented in this symposium - state it, so we can compare it with the decision analytic framework on its merits. Barry Message (2/7/97,
11:16 am) Dear colleagues: while I am all for a much increased rigor in our science education in the U.S., I don't think we should look to that as much of a solution to our problems. In the past two centuries, at least, science has always marched forward at a rapid enough pace that adults are doomed to not understand the "latest" issues, and human memories cannot be expected to retain enough to allow the majority of individuals to be literate on the new developments. I don't see this as much of a problem in most cases, because, as Zimmerman notes, the scientists themselves tend to be divided over the issues. So the differences in policy choice are often not a matter of scientific merit, but rather of value preferences. E.g. should one place the presumption of the argument in favor of the safety of untested rDNA technologies or against them. The answer to that question depends on the relative degrees to which you value public safety vs. rapid advance in research. It was ultimately resolved by lack of public interest in safety and strong scientific interest in rapid advance in research. More than public instruction in science education, I think we need to foster a feeling on the part of the public and those who presume to shepherd it that individuals who are not scientists are competent to assert their own values in the policy process, especially where the science is indeterminate, as it so often is. Celeste Message (2/7/97,
12:54 pm) You stated as an end goal preparing people "to fruitfully and securely inhabit" the gene age. The goal of the decision analysis - and, as I understand it, of the symposium - is considerably more modest. The goal of the decision analysis, at least, is to strengthen the role of the public in societal decision making regarding the use of genetic information, though this could be changed if the group wishes. While the material to be presented in the symposium can inform many decisions other than this one, this decision seemed to us to represent the focus of the papers. You stated as a sub-goal specific "prescriptions" for achieving the goal. These are what we have referred to in the decision analysis as "alternatives". So it appears to me that the decision analysis IS relevant to achieving at least a portion of your stated goal. However, decision analysis - or the particular form of it that we have offered - may not be the BEST way to achieve either the larger goal or the more modest one. I am certainly open to that possibility. (I hope all of you are as open to the possibility that it IS.) If anyone would like to suggest a better approach, I suggest that they state it in sufficiently operational terms that we can compare it and the current approach on their merits. Best regards to
all, Message (2/8/97,
12:07 pm) Celeste said that the tree and the table are useful but that we don't want them to become ends, in themselves, to the point where our discussion loses spontaneity. I heartily agree. We want to explore the issues thoroughly, and to that end we will do best to explore from a variety of perspectives. Spontaneous thought can certainly lead to different perspectives. The problem with spontaneous thought, however, is that it tends to get locked in familiar paths. Tools such as decision tables can provide unfamiliar yet relevant perspectives that can jog thought out of comfortable ruts and into neglected yet important areas. Though we should not always be thinking in terms of the decision table, we would do well to come back to it from time to time. Greg referred to a need for horizontal discussions. This sounds like a new alternative, a new row in the table, or perhaps a refinement of an existing row. In either case, relating it to the table raises the question, "What are the pros and cons of horizontal discussion? In what ways might it enhance the role of the public in public policy decision making, and what are the risks and costs? Also, how might horizontal discussion enhance other alternatives?" Greg also referred to the related issue of community building, and the same questions can be asked here. There seems to be a good deal of agreement on the importance of education. Since education involves a flow of information from scientists to others (the unshaded portion of the flow diagram), while our topic, as I understand it, involves the flow of information from the public to public policy decision makers (the shaded portion of the diagram), the relevance of education to our topic needs to be explicated. (It has been my impression much longer than this conversation has been going on that scientists, like everyone else, are more concerned about what they know that others don't know than about what others know that don't!) One way science education might enhance the flow of information from the public to decision makers would be in directing the attention of the public from issues of fact, which are best settled by scientists, to values, which necessarily require broad public discussion. I'm sure there must be others. Ronald objected that values should not be separated from beliefs. We may have just a language problem here - I'm not yet sure. First, I should say that there does not appear to be any way of drawing a sharp line between values and beliefs. The distinction, like that between night and day, is one that is unclear at the boundaries yet immensely helpful. I agree that values should not be separated from beliefs IN ACTION - any action should be justifiable in terms of both values and beliefs. (That's what I understand to be the motive for this symposium, that actions taken on behalf of the public not be separated from public values.) Nevertheless, it is immensely helpful to separate values from beliefs IN THOUGHT. This is because the best ways to think about the two differ. For thinking about beliefs, there is nothing to surpass the scientific method. (I recently read a statement in a church newsletter to the effect that science is what keeps religion from being lost in fantasy.) For thinking about values, however, the scientific method appears to be of little help. (The scientific method can be enormously helpful with what people think about unanalytically as "value issues", simply because such issues so often confound good values with bad science.) What seems to be most helpful in thinking about values, themselves, is exploring different value frames. Moreover, as Ronald has so helpfully pointed out, we don't so much choose our values as recognize them. With respect to a specific privacy-health tradeoff, for example, some people will come down on the side of privacy, and some will come down on the side of health. Neither need be wrong. The only issue is whether each has correctly recognized his or her own values. Given this, public policy should respect and serve both. I did not get in on this Conversation at the beginning, so, if anyone has expressed a thought related to the decision table or its use that has not yet received a response (or an adequate response) from me, please repeat it. I see some tendency - though a weak one - for the language and framework of the decision analysis to have gotten us talking more to one another than by one another, as well as more to the point of the symposium. In the interests of a coherent and effective symposium, I think we would do well to work together to enhance that effect. Barry Message (2/10/97,
11:57 am) Dear Colleagues, The following was composed shortly after receiving, several days ago, the fax DECISION ANALYTIC FEEDBACK for VIRTUAL CONFERENCE, prepared by Greg and Barry Anderson, and after receiving the remarks of David Micklos. I had thought I had sent it to the AAAS listserv, but apparently I was outsmarted by CompuServe's software. Hence, here it is, a bit late. Regards, Dear Colleagues, No, David, I don't think you're crazy at all. Having just read "DECISION ANALYTIC FEEDBACK for VIRTUAL CONFERENCE", I too find the whole concept not only bewildering but very artificial. While the jargon used, beginning especially with the title, does indeed grate severely on my sense of the use of clear, proper English, I am far more concerned about the construction of a grossly oversimplified representation of the individual and collective thought processes, experiences, qualifications, values, interests, and abilities to synthesize complex information for the formulation of useful public policy. There is a danger in putting people in boxes with labels on them. The decision of which labels to use, how many of what kinds of boxes to construct, how they are connected and interact, and which people are to be put into each, implies a deep and comprehensive wisdom that I suspect few if any of us are capable of. With all due respect to the efforts of Greg and Barry Anderson, the diagram on p.3 and the table on p.4 strikes me as confining rather than facilitating the complex process of decision making. Once the labels are stuck in place, they acquire a life, or pseudoreality of their own; people will then tend to think of the roles and views of the various participants as being represented by the labels you have assigned, rather than who they really are or what they really think. Is there truly a positive value in having us all think in terms of a "common framework"? In the first place, I doubt, given the obvious differences in the ways in which we think of these issues and what we consider important, just on the basis of what has appeared on the E-mail exchange so far, that we could ever agree on such a common framework. If we could, it would be far more complex than the one you have drawn, with many more interconnecting lines. No doubt "keeping it simple" makes it easier to handle, but that must not be done at the expense of important information and the way it is processed, including the loss of the subtleties and nuances of meaning that are important in this kind of discussion. With regard to your assignments, I admit to being a bit irritated to see that you have stuck me in the "health values" box and nowhere else. Does this mean that my views and experience with regard to all other aspects of this discussion are not considered important, or are somehow of less value than those of the others? Have I already been relegated to the "Biotech Industry" box, which is presumably only concerned with the "market" (referring to C. Condit's unfortunate use of yet another label, which again limits rather than clarifies the discussion)? Similarly, I must say that having read the same material you did, I find a number of your other assignments curious. I strongly suspect that all of us have thought about and have something to say about everything you have included on pp. 3 & 4, and more. Why, for example, do you see about half of us discussing particular values but not applying them to the evaluation of any alternative? Given the supreme challenge of trying to get this framework to the point where we are all reasonably content with the way the subject, and our individual roles, are represented, and the somewhat dubious value (to me at least) of the process (whatever that is) in the event that we eventually do get it right, I really think that we can use our time more constructively. That is, it not at all clear to me how such a construct is really going to make the process of policy formulation and decision making any easier or any better. I didn't think that the goal of this symposium is for us to reach any kind of consensus on a comprehensive public policy to govern the present and future applications and uses of detailed genetic data, or even to agree on a process by which such policy can and should be formulated. Or is it? For an excellent discussion of how human thinking is colored and directed by the words and labels we assign to what we are talking about, see Lakoff & Johnson, "Metaphors we Live By" (U. Chicago Press, 1980). Regards, Message (2/10/97,
4:17 pm) I meant to post the following reaction to Burke's message to the list, but only forwarded it to him. Hmm...I guess that means I have a second chance here to reword this a bit. Burke, I understand your frustrations with the two diagrams, but I think you were a bit harsh in your comments. What did you think of the remarks that have been posted since the Fax went out? I thought Michael stated pretty convincingly how, even though the diagrams are simplistic and unrefined at this point, they were useful in guiding his thinking about the discussion. Also, Barry has tried to qualify some of the logic behind using them as analytic tools that might lead each of us to reflect on his/her presentation. I find it interesting that you (along with several others on the panel) reacted so negatively to the tree and table. I agree that boxes and labels can misrepresent the complexity of each person's values, but if the session is to be more than just 9 different perspectives on the topic (another panel of talking heads), we must explore commonalties that lead us toward constructive strategies for engaging the public (not just policy makers) on these issues. Using the two diagrams was only an experiment in drawing out various approaches to this very complex topic. Sure we could simply listen to what each of you have to say and then come up with our own strategies. But isn't it more effective to work towards a shared understanding of each other's approaches and viewpoints? Alex Fowler Message (2/10/97,
5:55 pm) I'll do my best to respond to Burke's objections, as I understand them, one by one. THE REPRESENTATION IS OVERSIMPLIFIED. That the representation is greatly simplified is an undeniable statement of fact. Whether it is oversimplified, a statement of value, depends entirely on the purpose for which it is intended. For example, even a complete genome map for an individual would enormously simplify all that that person is - and would undoubtedly greatly offend many persons - yet for certain purposes it would be no oversimplification, at all. The purpose of a decision analysis is to make a decision, and, in decision making, an enormous amount of information must be reduced, sometimes, quite appropriately, to just a "yes" or a "no". The purpose of the present analysis, however, is not to make a decision but simply to introduce the information-reducing perspective of a decision maker. (Remember President Truman's wish for a "one-armed economist".) The hope is that making this perspective salient will encourage those of you interested in particular alternatives for enhancing the role of the public in public policy decision making to help decision makers think through the POSITIVE and NEGATIVE FEATURES of THOSE ALTERNATIVES and encourage those of you interested in particular values to help decision makers think through the APPLICATION of THOSE VALUES to choosing among alternatives. Doing so should increase the chances that they will make use of what you have to say. One final point with regard to oversimplification. In terms of the decision table, with its many empty cells, it is your presentations that are oversimplified. What is simple and what is not depends on one's point of view. To make sure that we don't oversimplify, we should consider a number of points of view. Often, the frameworks that have the greatest potential for enlarging our point of view are the very ones that are the most difficult to understand initially. IS THERE TRULY a POSITIVE VALUE in HAVING US ALL THINK in TERMS OF a COMMON FRAMEWORK? I think the alternatives are thinking in terms of (a) individual frameworks, (b) a common framework, and (c) both individual frameworks and a common framework. The principal argument for individual frameworks, as I see it, is that, since no single framework is completely adequate, thinking in terms of a variety of frameworks should lead to a more complete exploration of the relevant issues. This same argument would seem to point even more clearly to the third alternative, thinking in terms of both individual frameworks and a common framework, since this results in the greatest number of frameworks. (No one has ever suggested the second alternative, abandoning individual perspectives.) There is, as already noted, an additional argument for the particular framework proposed here, that it is closer to the perspective of decision makers who will have to decide whether what we say is of academic interest only or truly informative with respect to the job they have to do: choosing among alternative ways to incorporate public values in public policy decision making. YOU WERE IRRITATED TO BE PLACED in THE "HEALTH BOX" and NOWHERE ELSE. I'm delighted to hear you say this! I've probably misplaced other participants, as well, but, so far, they haven't been this articulate in their complaints. Yet this is only half of the response I was hoping for. In order to correct my error and place you correctly, I need more INFORMATION (as would a decision maker reading your presentation). I need to know what you are saying about each of the alternatives and values that you have concerns about. As I indicated in an earlier posting, it will take ALL of us to do this right. This task requires dialogue. YOU DIDN'T THINK THAT THE GOAL FOR THIS SYMPOSIUM WAS TO REACH ANY KIND OF CONSENSUS. I don't either. The goal is not for us to complete the decision analysis. This is a task for decision makers. The only goal is to achieve some agreement on the kind of decision we are hoping to inform and then to make clear the relevance of what we have to say to that decision. HUMAN THOUGHT is COLORED and DIRECTED by the WORDS WE USE. This is certainly true, but we can't therefore choose not to categorize and label. Try to imagine, for example, science without scientific categories or terminology. All we can do is try to become aware of biases and work in various ways to correct them. One way to become aware of biases introduced by a system of classification is to take the perspectives of alternative systems of classification. The decision-analytic framework is just such an alternative system. (I hate to keep coming back to this theme.) A serious attempt to organize our material in terms of the decision analysis is likely to uncover biases that are difficult to see when using the category systems we are most comfortable with. It appears to me that the decision table has already revealed some large gaps in the original presentation summaries and that it would be worth taking a little time to think through how those gaps might be closed. To the extent that I've oversimplified your positions, they should be easy to close. Greg Continue with Part IV |
