Virtual Pre-SymposiumFrom January 13 to February 17, 1997, the participants in the AAAS symposium "The Human Genome Project: What's the public got to do with it?" participated in a pre-symposium dialogue faciliated through an electronic discussion group (listserv). The following transcript consists of almost 50 messages, which are organized into four parts, according to the date and time received by the organizers.The Participants
The Transcript, Part IMessage (1/13/97,
12:49 pm) Dear AMSIE'97 Symposium Participant! Happy New Year! With our symposium, "The Human Genome Project: What's The Public Got To Do With It?" fast approaching (i.e., Monday, February 17, 1997), it is important that we establish a communication now -- and during these next four weeks -- to (1) get some real sense about what each of us will be contributing to the session; and (2) establish how we can maximize the outcome of our collective effort. For your information, here is the final listing of our panel of speakers and the topics which each will present, not necessarily in order of appearance: "Genomic Science in the 21st Century" (Glen Evans); "Beyond the Science: Ethics and the Human Genome Project" (Eric Juengst); "Educating Precollege Students for the Gene Age" (David Micklos); "Lay Audience Responses to Public Messages about Genetics" (Celeste Condit); "Involving Ethnic Communities Concerns and Priorities in Human Genome Research" (Fatimah Jackson); "Today's Biotech Industry: Confronting Public Concerns About Genetics" (Burke Zimmerman); "Pastoral Genetics: Genetic Counseling and the Church" (Ronald Cole-Turner); "Community Responsibility and the New Genetics" (Michael Garland) and "Ethical, Legal, and Social Implications of the HGP and Congress" (Mark Frankel). Note: while you can still change the title of your presentation, please be aware that it is now too late to make any changes in the program book. To learn more about the specifics of our individual presentations and maximize our collective effort, we would like to suggest a series of e-mail communiqués over the next several weeks which contain the following:
We suggest that the two items above be the substance of two separate communiqués, respectively. A listserv is now established to facilitate the process of direct communication between all members of the group. Messages sent to AAASHGP@AAAS.ORG (caps not necessary) will be automatically forwarded to all of the session participants. Note that the listserv is not publicly available and will be dismantled following the symposium. (Please contact Alex, afowler@aaas.org, with any questions you might have re: the listserv.) Using this approach, we feel that issues of overlap between topics can be avoided, thus maximizing the quantity and quality of useful information presented at the Symposium. Equally important, if we are all aware of the perspectives of others on the two items above (and listserv discussion and clarification is encouraged), the integration of the individual presentations into more of a "seamless whole" will take place at the Feb. 17 event. Toward this end, may we suggest that item 1 above (i.e., receipt of your individual perspective on the relationship of the public to the HGP) appear on the AAASHGP listserv no later than Friday, January 17. That will be followed with your list of approaches and strategies a week later (Friday, 24). The remaining two weeks (January 25-February 8) will be spent fine-tuning the symposium through group Internet discussions. In summary, if you are looking forward to this symposium as much as we are, it will be an event worthy of fond memories. Too often, invited symposia do not achieve their lofty promises. Given the quality of our panelists and the interdisciplinarity of the perspectives, this one will be a notable exception. We are very appreciative of your time and efforts and pledge to help you maximize both in the service of a great experience. Sincerely, Greg Fowler Message (1/15/97,
9:30 am) Dear Colleagues: The following is my statement about the question "What Does t he HGP Have to Do with The Public?" It is relatively brief, so I can expand on it if needed. IN brief, however, my paper reports the results of a study that suggests that substantial segments of the public are capable of making critical judgments and independent interpretations and valuations of the HGP, both with regard to their own applications of HGP technology and with regard to social policy about the HGP. The study shows that college-educated young adult readers of mass mediated messages about the Human Genome Project do not simply absorb the content of news articles about genetics uncritically, nor do they uniformly interpret these messages in ways that favor deterministic or discriminatory outcomes based on genetic information and technology. The study focuses on the "blueprint" metaphor for genes. It indicates that the majority of this audience segment interpreted the "blueprint" metaphor as being relatively non-deterministic (seeing it as malleable, probabilistic, and partial) and relatively non-discriminatory (seeing it as sensitive in tone and compatible with non-discriminatory attitudes toward persons with disabilities). In keeping with the tenets of my field, the study presumes that the "public" is constituted by all those individuals who are participating in the process of constructing the shared social narratives and value structures of a given collective entity, either through the construction of discourse or through behavioral choices that shape the possible discursive constructions of the collectivity. Sincerely, Celeste Condit Message (1/18/97,
12:15 pm) Dear Colleagues, As the designated representative of the biotech. industry, with the assigned topic: "Today's Biotech. Industry: Confronting Public Concerns about Genetics" I must, in the absence of hard data as to what these "Public Concerns" actually are, and without a clear view of who/what the "Public" actually consists of, take the liberty of defining what I (and the pharmaceutical/biotech industry in general) consider the "public" to be, and anticipate, as a member of this public myself, what it is they/it SHOULD be concerned about. In these discussions, as you all know, most of the general public is passive and never expresses any views on most scientific, technological or medical issues, especially those that are at this stage abstract or technically difficult for the layman to grasp. There are some activist and special interest groups that purport to represent the "public", but I think you will all agree that many of these, especially the most strident critics, who are usually against the use of novel technologies, and particularly those utilizing genetic manipulation, do not in any way represent a public cross section. This does not mean that the questions and concerns raised by the Jeremy Rifkins or Ruth Hubbards of the world are invalid or do not deserve a response. But one should not automatically equate the view or concern of every critic with the concerns of the "public." Therefore, from my perspective, I must define the public as the current and prospective users of technology, diagnostic or therapeutic interventions, or biologics, including vaccines, and pharmaceuticals, that have been, or are being developed, at least in part, on the basis of information gained through the HGP. This, of course, includes about everyone, since products are now under development that are intended for universal use that depend on a detailed knowledge of, for example, the distribution within a given human population of specific elements of the immune system. My company, Spectrum Medical Sciences, is currently participating in an extensive study, funded by the European Union, to identify the parameters of protective immunity to intracellular parasitic infections, with the object of designing a new generation of vaccines based on the stimulation and modulation of specific T-cell responses. Data on the identity and population distribution of HLA haplotypes will be invaluable to our study, and absolutely necessary in the formulation of efficacious human vaccines for a variety of important disease targets. The concerns of the public will, of course, depend on an understanding of what kinds of interventions or products they, or their friends or relatives, may be subjected to. In the arena of pharmaceuticals and biologics, the data from the HGP will greatly enhance the type and variety of new substances. But the legitimate concerns over efficacy and safety are not in principle different that those from the era that pre-dated the HGP. If anything, the extensive data that will be forthcoming from the HGP will not only enable the design of novel products, but will permit us to assess possible risks and side effects much more intelligently a priori. That is, pharmaceutical design and testing has traditionally been empirical, with thousands of randomly generated compounds tested for a desired biological effect without any idea of mechanism, and safety assessed purely by direct testing. As a result, many long-term side effects of drugs, or those that occur only under conditions such as pregnancy, have been missed, sometimes with tragic results. With advances in rational drug design and with extensive knowledge of human physiology, biochemistry, and immunology derived in part from HGP data, we are in a much better position to product both the positive and negative consequences of any new compounds, or, for example of medical intervention based on a "gene therapy" strategy. That is, since the primary focus of the biotech and pharmaceutical industry, defined broadly to include gene therapy, is the development and manufacture of interventions for the prevention and treatment of pathology, the principal public concerns will be, or should be, how efficacious a new preventive or therapeutic strategy will be, and what the risks of unexpected consequences will be. While this is hardly a new principle of public responsibility or accountability, the situation obviously gets more complex as we learn more and more. But in my opinion, the more we know, the stronger will be our basis both for assessing the outcome of novel interventions, and assessing the risks. That is, the trend is toward the reduction of uncertainty, and that should be viewed by the public or the consumers, as reassuring, especially when viewed against the highly empirical, uncertain approaches to medicine and pharmacology of past eras, when risk was very difficult to predict. There are of course peripheral areas of public concern that arise from the application of technology provided by industry, that are not matters of safety and efficacy, but relate more to privacy, and the possibility of discrimination of one sort or another based on one's genetic makeup. In my view, human genetic screening is immensely valuable from a medical point of view, permitting as evaluation even at birth of the probability of the occurrence not only of specific genetic diseases, but of susceptibility to a wide range of pathologies, including psycopathology, most infectious diseases, autoimmune diseases, and those such as cancer and coronary heart disease (which may also have an infectious etiology). Such information will, if properly utilized, permit individuals to optimize their health status throughout their lives. Concerns over job discrimination or insurability, which seem from my perspective as a European resident to be purely American problems, derive in large part from the most unfortunate directions that healthcare and health insurance have taken in the United States in recent years. Such issues don't exist in most of the rest of the world, especially in countries such as the one I live in where the safety net is 100% effective, period. These are social and political issues, and should be dealt with as such. I cannot accept calls for not obtaining important medical or genetic data simply because individuals or institutions will use it against a person. If we agree that it is unethical to discriminate against a person, with respect to potential health status, then social and, if necessary, legal safeguards must be put in place to protect individual rights. But scientific or technical know-nothingism is not the answer. Well, folks, the above was contributed in response to Alex's request, and constitutes a more or less spontaneous, and unedited response to the topic as it was presented to me by the organizers, composed on my laptop this Saturday morning while in the Boston area on business. There are no doubt other issues that I will touch on in my presentation. I would of course be grateful for any reactions or comments concerning the above, or issues that the others on this panel believe should be addressed by the guy from the biotech industry. Burke Zimmerman Message (1/17/97,
5:07 pm) Pastoral Genetics: Genetic Counseling and the Church Genetic counseling is usually guided by the principle of nondirectiveness, which is based in part on the basic bioethics principle of autonomy. Its observance means that the religious concerns of patients or counselees should be respected, and the desire of counselees to involve clergy should be granted. With some exceptions, it is the case that in various strands of the Christian tradition, the religious and moral concerns that bear upon the uses of genetic screening and testing are not yet clearly identified by those who hold teaching or moral responsibility within those strands. Nevertheless, the implicit concerns may play a highly significant role in determining the use that will actually be of genetic diagnosis. These religious concerns (guilt, grief, the status of the fetus, the meaning of suffering, the question of life after death) are summarized. Some effort is made to compare various interpretations of these concerns within Christianity. I try to suggest how these religious concerns may affect ethical decision-making within the clinical genetics context, especially in regard to prenatal genetic testing, with the implication that ethicists and genetic counselors should be aware of these religious complexities if they are to understand the decision-making process that the patient is employing. I conclude with suggestions as to how religious considerations may be brought to bear on preimplantation genetic analysis and to the future possibility of human germline experimentation. Ronald Cole-Turner Message (1/18/97,
7:58 pm) As with any other social issue capable of affecting the lives of many people, the HGP raises complex and difficult choices among competing values. And when human health and the quality of life are central to the assessment and resolution of such issues, the stakes are high and the matter is likely to surface on the nation's policy agenda. It is through the political process that the debates over these issues are translated into policies and programs. My presentation will examine how the U.S. Congress--the people's representatives--has defined the issues and attempted to respond to them in one of our country's most public institutions. The "data" for this examination will come from several pieces of legislation introduced in the last Congress and hearings held in association with those bills. I'll identify the key actors and their interests who have been involved in pressing Congress to take action on these issues and the very prominent role that scientific discovery has played in placing these matters on the Congressional agenda. And, at the risk of committing serious folly, I'll speculate (not to be confused with actual prediction) on what the legislative priorities related to genetics will be in the new Congress. I look forward to joining all of you in Seattle. Mark Frankel Message (1/20/97,
1:47 pm) Approaches and Strategies for Stimulating Structured Dialogue with the Public A great deal of interest has recently gone into the construction of artificial dialogues with the public as a means for improving public discourse on specific issues. That is, scholars and public activists have sought to create isolated venues where some small slice of the public is engaged in a structured communication event about an issue such as genetics (e.g. the "American Issues Forum"). Such staged events, however, appear to be both futile and disrespectful of the existing processes of democratic discussion. They are futile because it is not possible to engage more than the tiniest group of people in such events, their impact is not integrated into the policy process, and it is never reasonable to treat the products of such artificially created events as though they were representative of the full-scale, natural elaborations of the democratic process. Such artificially structured events are also disrespectful of the existing processes of democracy because they presume that the large scale and long-term debates about social policy that occur through the media, through local conversations, through experience with technologies, and in legislative fora is so me how inferior to the artificially manipulated dialogues puppeteered by experts. In the case of the HGP the temptation to create artificial dialogue is particularly tempting. A wide variety of writers have argued that the scientific world has colonized public debate and paralyzed and co-opted it. Hence, experts make decisions for the public, rather than the public making informed decisions. I believe that such arguments over-state the case dramatically -- as books such as THE RATIONAL PUBLIC demonstrate -- the public are not ignorant and irrational. To the extent, however, that these theories contain grains of truth, the remediation does not lie in technical experts constructing artificial debate venues, pumping the participants full of technical information, and then taking dictation from the outcome. Rather, we ought to seek to improve the existing process of public debate rather than supplanting them. Two venues exist for this. First, audience studies should increasingly be used to supplement traditional survey research. Survey research asks members of the public only what their broad attitudes are about specific topics; it does not ask (and with closed questions cannot ask) what the interpretations of various discursive options are. Audience studies that incorporate qualitative methods are thus necessary to assess the ranges of ways in which the public interprets and puts to use public discourse, as well as the ways in which it might be modified. Audience studies are more relevant to policy and technologies in the dissemination stages. Not only should more audience studies be conducted about the new genetics, but such studies should receive public attention. The barriers to this broad dissemination in the past have been a distrust of qualitative methodology and the preference for surveys on the basis of their broader "representativeness." Providing sufficient funding for audience studies can overcome the latter barrier, and the pursuit of balanced and careful (rather than demagogic) qualitative studies that respect the empirical goal of understanding can overcome the former barrier. The second way in which we might seek to improve the existing process of public debate is to improve the understanding and access of reporters (and there by scientists and policy-makers) to the public's impressions of the extant public discourse about genetics. Reporters tend to write in a vacuum and have only indirect and partial feedback from their audiences. Making reporters aware of specific audience responses to their work is an important component in increasing their ability to make appropriate statements in the press, which serves de facto, as a record of the "public mind." Currently, reporters tend to over- privilege the official voice of science, falsely assuming that scientists have a sacred role to play in social policy. They thereby, directly or indirectly, delegitimate other voices who should participate in shaping the social interpretation and application of technologies. Social policy about science and technology is not a product merely of the science and technology themselves, but should be a product of the interaction of these characteristics with the broader values and forces of the public realm. Scientists (like everyone else) necessarily offer self-interested, or at least horizon fore-shortened, views of technologies, and scientists have no special social expertise. Balancing scientific views by other perspectives should therefore be a routine requirement of good science journalism. These balancing factors, however, should not come merely from social critics who are ideologically opposed to science, but rather from a variety of sources, including the lay public, humanists, social scientists, and religious and political leaders. That ends my statement, but in the spirit of dialogue I'd like to reply to Burke Zimmerman's definition of the public. Note that this is a definition of a "market" not a public. Those who are not positioned (or interested) in using the technologies produced by genetics are still part of the "public" that has a say in shaping how society should deploy these technologies and the information correlated with them. Definitions that conflate the "public" with a "market" for particular products are highly problematic since they presume that those who are damaged by secondary effects of a product have no say in controlling the use of the product. They also presume that the only criteria of social good is individual use value. Current problems with regard to the environment should refute such assumptions. This is not to say that activists and social critics accurately represent anything more than a sliver of the public. My own study suggests that they do not. However, let's not narrow the parameters of the outcomes of the HGP to considerations merely of product efficacy and safety. CM Condit Message (1/21/97,
10:57 pm) Dear Colleagues, I see that I have already been taken to task by Ms. Condit for defining the "public" and their concerns too narrowly. Please keep in mind, however, that my brief as the guy from the biotech industry was to address the question from the perspective of the industry. Of course there are many publics and many issues requiring attention within the domain of the global HGP. However, the principal focus of the biotech/pharmaceutical industry, defined as broadly as you wish, is still a somewhat restricted subset of that domain. Hence defining the public to which the industry owes its primary accountability is indeed that comprised of, as Ms. Condit puts it, the "market." Obviously, as in all other branches of pharmaceutical, biologics, and medical interventions, there are many sub publics, some quite large, but many rather small. And frankly, the overwhelming majority of concerns are those dealing with the outcome of the intervention -- will it benefit the patient/user and will there be predictable or unpredictable undesirable consequences. It would be a grave error to lump every component of the public into one generalized entity to be called "The Public", just as it would equally erroneous to put all genetic data and uses of genetic data into one box called "Genetics" and treat it as a single entity. For example, there is a small "public" concerned about liver transplants, and the risks and benefits to an individual patient or prospective patient having to make a choice. There are not overarching philosophical or ethical issues, however, that transcend the risk and benefits of a particular medical intervention, or the autonomy of the patient. While liver transplants are not within the realm of "genetics", there are procedures that are, which are viewed in exactly the same way as a liver transplant. For example, an experimental procedure is now undergoing clinical evaluation in which balloon angioplasty is accompanied by the infusion into the damaged arterial endothelium of DNA coding for a growth factor that stimulates the proliferation of new endothelial cells. The theory is that this kind of somatic targeted gene therapy will promote healing of badly damaged/diseased coronary arteries. This is an issue of a relatively heroic and expensive intervention that could possibly have great benefits to seriously ill patients, but until there are sufficient clinical data, we won't really know how effective the procedure will be. But there is not nor is there likely to be a general public concern or debate over using such procedures on a small and narrowly defined population of users. I should point out that the development and testing of this procedure is being enabled with the support of a small company founded by two of the medical faculty of a university who pioneered the procedure. Public funding was not available for the necessary R&D. At the other end of the user spectrum, let's consider a vaccine that might be recommended for universal infant immunization. A good example might be a vaccine for Group B meningococcal meningitis, which seems to be endemic at a low level in all populations. The design of the newest vaccines, especially those based on the complexities of T-cell interactions, will benefit immensely from genetic data related to the immune system and its considerable variation among the individuals of a population. But what is the difference in the public's concern over the development and use of such vaccines, and conventional vaccines? Frankly, the risks of vaccines derived from whole pathogens are far greater than those from a completely defined and characterized formulation in which the causes of trouble present in the older vaccines have been eliminated. Is this kind of application subject to new "concerns"? If so, what could they possibly be? The public should be delighted that the HGP is now allowing us to know what we are doing, resulting in much safer and more efficacious pharmaceuticals and biologics. I would ask Ms. Condit directly if there are public concerns over these applications, beyond the usual requirements that are stringently applied by the FDA anyway, that I have somehow missed? This is, then, representative of the scope of applications of HGP data that the biotech industry is currently involved in. Of course there are many kinds of new pharmaceuticals under development, but the principles are the same. What I have been leading up to is the fact that public concerns over possible applications of extensive genetic data and biological data yet to be gained, such as human enhancement "therapy" or engineering are altogether different than those over the activities of the biotech industry at present and at least over the next 10-20 years. I have no doubt that it is only a matter of time before it will be possible to intervene in the genetic makeup of children to be conceived in vitro virtually ad libitum. The permissible use of such technological power, and who should make the decisions and how, pose a major challenge to society. Similarly, the potential for harmful or diabolical uses of the new genetic data more or less parallels the potential for doing good things. That is, the prospects for any imaginable kind of biological weapon are scary indeed if one cares to think about it even for a moment. That is, we have already gone way way past the point where biological weapons consisted of pandemic infections or microbial toxins. It is, or soon will be possible to insidiously attack, on an ethnically or sexually specific basis if one chooses, any biological or neurological function one wishes. The BW Convention is sadly outdated, and never was an effective means of control anyway. Shouldn't the public, defined generally, be very concerned about this issue? Certainly. But this is a different discussion than "Confronting Public Concerns About Genetics" from the perspective of the activities of "Today's Biotech Industry." At this point, I would ask the organizers to comment, especially since it was they who selected this title, presumably with a particular focus in mind. Greg? Alex? Best regards, Burke Zimmerman Continue with Part II |
