National Institutes of Health U.S. Department of Health and Human Services
Preliminary Summary of Responses To Pre-meeting Questions
Underlying Issues and Concerns:
Few of these questions are new. Most have occurred as new techniques for individual identification have been discovered in the past 150 years (photography, anthropometry, fingerprinting, blood typing). It is important to utilize cross-cultural as well as the historical perspectives of the humanities to explore these questions. Understanding these questions of identity in past and different cultural settings is one of the best ways of anticipating and preparing for the consequences of current and future genetic discoveries.
The most important feature about questions of identity is that people have multiple ways of identifying themselves; hence changes in understanding identity may have different effects, depending on the level of identity. For example one can see new genetic discoveries permitting new ways of establishing identity on three levels: 1)the identity of the individual; 2)the identity of sub-groups of human populations; and 3)the commonalities of all humans. Individual identity, which is the ability to recognize unique distinguishing features of individuals, will have a number of consequences, sometimes operating at cross-purposes. Group identity refers to the identification of sub-groups (families, races, nations), which are based on understanding of descent, and changes in genetics have had and will have consequences. Commonalities, which refers to the extent to which all humans share a common heritage, is another level of identity that genetic discoveries will reinforce or challenge.
Many in our society can be persuaded to support expensive research into genetics because of its promise for improving human health and well being. Yet, considerable dis-ease lies just below the surface regarding future distribution of the medical benefits. Framed in terms of global justice, voices are rising to speak in behalf of the world's poor and marginalized, those who might be left out due to economic forces. Research is needed that combines philosophical work on concepts of justice, economic projections regarding costs of genetic research and likely scenarios for distribution of medical benefits, plus recommendations for a balanced relationship between government funded research and venture capital research.
The public policy debates regarding reproductive cloning and therapeutic cloning that involves deriving stem cells depend upon underlying worldviews that include differing commitments to morally protectable human rights. Careful research into the philosophical history of differing anthropologies - Western European naturalism, Roman Catholicism, Evangelical Protestantism, Liberal Protestantism, Judaism, Islam and Buddhism - would help to map intellectually the various positions taken in the public debate. These differing yet in many cases overlapping views of human nature will continue to energize future debates that genetic research may elicit. Philosophers and theologians along with specialists in the world religions could work together with molecular biologists and bioethicists in anticipating future controversies.
The level of culture currently shared worldwide is heavily influenced by announcements of new discoveries in genetic research, and a growing belief in genetic determinism is becoming influential on human self-understanding. In addition to molecular research connected to the Human Genome Project, the fields of behavioral genetics and sociobiology contribute to the growth in this cultural interpretation of genes. When genetics is combined with Darwinian evolutionary biology, the new synthesis leads us toward a belief that the human race today is the result of our evolutionary history. Among other implications, this suggests that human behavior that many consider anti-social - such as xenophobia, racism, war, genocide - is genetically pre-programmed due to adaptations from previous chapters in the history of mutation and natural selection.
When it comes to justice issues arising from various aspects of genetic research, special concerns regarding the role of women arise. Specifically, a widespread fear is growing among bioethicists that further research into such areas as cloning and stem cells may necessitate harvesting large numbers of eggs from women. Advertisements for college women to sell their eggs to laboratories are already creating controversy. Worries about the future health of women who donate or sell eggs are appearing. NHGRI should sponsor research by teams of geneticists engaged in such research along with women's studies scholars to determine to what extent health risks exist and to what extent justice issues need addressing."
Many of the interesting moral and aesthetic questions surrounding the impact of genetic information and technologies are best studied now in relation to plants and animals (for example, agricultural biotechnology) where the relevant technology is now in place, rather than in terms of human genetic engineering, which is largely science fiction.
We should hold the fort against genetic essentialism, determinism and exceptionalism - and not be taken in by these views of the centrality of the genome even if they make our own work more "central." Rather, NIH should continue to support research that shows, as appropriate, that there is less here than meets the eye, for example, that germ-line therapy for terrible genetic disorders is, alas, still very far from our reach. The public may be taking its cue from the practice of genetic engineering in agriculture, where it is going like gangbusters. Again, more attention to the similarities and differences in the agricultural and human contexts would be advantageous.
What does worldview research actually mean, and what might it accomplish? From the perspective of political theory, "worldview" might refer to the deep fissures that run through our political, social and cultural life. Thus the apparent flight from politics, and more specifically, acknowledgment of conflict, in discussion of worldview issues, is notable. Even when such divisive issues as "identity" are discussed, the treatment seems curiously bloodless. Particularly striking is the silence on abortion, in spite of the fact that attitudes toward abortion are obviously informed by worldview, and that abortion politics has been a powerful factor in shaping public policy; e.g. it goes a long way toward explaining why there is virtually no regulation of the fertility industry at the federal level.
Many philosophers have been involved in ELSI projects. Investigators have included bioethicists, moral philosophers, philosophers of science and experts in legal theory, as well as theologians. Political theorists are notably absent. Yet worldview is their stock-in-trade. And political philosophers are likely to be sensitive to the fact that we do not all share the same worldview, and to acknowledge and address ideological fissures.
The framing of ELSI issues is typically passive; e.g. a goal is to "explore ways in which new genetic knowledge may interact with a variety of philosophical, theological and ethical perspectives." Almost always, the point seems to be to study how developments in genetics will influence how we see ourselves or the world - as though we are helpless to do anything but adjust.
SPECIFIC RESEARCH QUESTIONS: Basic and Applied
Basic Philosophical and Theological Issues:
How does the completion of the human sequence exacerbate or mitigate the tendency towards genetic reductionism (i.e., that an individual can be reduced to his or her genetic makeup). How does it interact with concepts of self and responsibility?
How much - and precisely what - do we have to fear from genetic determinism?
What is the significance of the growing belief in genetic determinism that is being spawned by the synthesis of Darwinian evolutionary biology with new discoveries in genetic research, behavioral genetics and sociobiology for the anthropologies of contemporary religious traditions, especially Western monotheisms such as Judaism, Christianity and Islam, wherein the human being is considered to be made in the image of God, imago dei.
What are the differing yet in many cases overlapping views of human nature underlying the current public policy debates regarding reproductive cloning and therapeutic cloning that involves deriving stem cells from embryos?
How does new information about the human genome impact how we think of ourselves as humans? And how are the changes in our understanding of our identity different for different theological and philosophical worldviews?
How do religion and genetics interact and can they work together to help us all understand human nature better?
Which aspects of our biology appear to be important to the identity of the human species - or to the inclusion of a creature in that species - and which aspects appear expendable? Is the "species" concept useful or is it more trouble than it is worth?
What makes "humanness," and do we care about biological "humanness" or something else? Is a cross-species creation, if it is ever produced, going to be "human" and given "human rights" whatever they are, citizenship, etc., if it can do what we think of as "human-like" things such as think, have opinions, emotions, reproduce itself? Since not all humans accorded moral status can do some of these things, which ones count, if any do, to have an entity count as "human," or do we not care?
What constitutes "life," and why has "life" been considered special, even if not sacred? (This is important in trying to determine why, for some people, an embryo, a new genetic entity, differs in any psychological, social or moral way from the separate egg and sperm that compose it.)
In emerging issues of identity, no discussion has come up of "family" identity. Why do people want "their own" (genetic) children? What is the psychological, social, cultural, perhaps theological significance of genetic connection in some cultures and for some people, but not in others? (These questions have implications for the practices and policies surrounding adoption, reproductive technologies and practices, and ordinary procreation.)
Why do some technologies appear valuable and others for some people seem dangerous and frightening, violating of "nature" in an important way? (Genetic "enhancement" for some people is in this category, but selection of offspring characteristics is in this category for others; reproductive and genetic manipulations are in this category of unnatural and frightening for others. Serious thinkers who have been grappling with these questions for years find themselves at different points on this spectrum.) What are the values underlying the different places that people get on or off the "frightening and dangerous" spectrum?
Is there knowledge that humans should decline? (I doubt that such an idea is a popular concept, but much of the quest for genetic knowledge about ourselves makes me wonder. Do people really need to know "the hour of their death" if they ever could? Some people want to, of course, but many do not.)
What values about life account for the differences? Are these actually different stakes that people have about not health or longevity, but about the importance of control, predictability, planning in their lives?
Many people, certainly the authors of many important ELSI-funded works, believe that genetic knowledge will improve efforts at social equality, social justice and the possibility of a good quality of life for the citizens of the world. What is "quality of life" and why is it linked in so many people's minds to "the right to an open future?" What about other measures of what makes a good, worthwhile, valuable life? Can we find some?
What are the values underlying the quest for the basic knowledge that the geneticists want to gather, since alleviation of human problems seems to be very far from what is happening with the knowledge gained so far. (Perhaps our knowledge of genetics will one day lead to assistance in making life better for actual human beings, but so far that does not seem to have been the case, except for the assistance given to people wishing prenatal diagnoses of various characteristics.)
Should we be concerned about genetic manipulation of the body if it does not affect the soul and therefore its contribution to human identity? Or is there something about the body that people might use genetic engineering to change and that that would affect the way the soul attaches to the body? Can we revisit Aquinas et al. to see what the doctrine of the soul can tell us? With the resurrection of the flesh - essential to meaningful, individuated immortality on most philosophical accounts (e.g., Peter Geach) - people will be made, not born; what distinguishes the most fantastic hopes for genetic engineering from resurrection with respect to those who are "saved" in this way?
What constitutes enhancement - where do we draw the line between therapy and enhancement? How is that determined by worldview, religious beliefs and philosophical understandings of the individual and the community?
Is there a moral difference among ways to endow people with greater powers or opportunities? Education, socialization, training, medicine, even pre-natal heath care are all legitimate ways to influence or change ourselves and our children. Why would genetic interventions be treated any differently?
How do we negotiate human needs and claims for animals' moral rights in an era of greater genetic understanding of the connectedness/ similarity of life forms and genetic technology's greater ability to breach species boundaries?
How does the ongoing work in comparative genomics (i.e. comparing the genetic sequences of different organisms) influence concepts of the place of humans in the wider animal kingdom?
Suppose an ape gene is found to provide immunity to HIV/AIDS: What kind of resistance will be encountered to employing this?
What kind of resistance will there be to implanting a peanut or potato gene in a human?
What are we talking about when we refer to the biological foundations to human nature? Do human freedom, identity, or dignity depend, somehow, on our accepting certain biological facts as given and inviolable, or is everything biological susceptible to improvement, disposable, or up for grabs?
How does genetics interact with the historically important concept of a shared human heritage?
What is the impact of behavioral genetics on the traditional nature-nurture controversy? How does behavioral genetics come out of and, perhaps, promise to change, or even end, this peculiarly Cartesian/enlightenment view of how things work?
Can we dispose of the morally and legally significant distinction between "the world of born" and "the world of made" (e.e. cummings)? Suppose the living world becomes one of "made" rather than "born" - in other words, that life becomes an artifact. Does this in any way imply that life will lose its dignity, meaning, value? Would we be committed to an instrumental view of the value of life - and, if so, instrumental for whom or what?
Is there any problem if the individual understands its subjective "nature" to be objective or determined, e.g., engineered? (In other words, does genetic technology in any way implicate Kant's subjective-objective distinction?)
How much difference does it make that one's characteristics are chosen rather than accidental? If your parents determined to have a boy and thus chose your sex, what difference would that make to you - given that's who you are? Which characteristics, were they somehow matters of choice rather than chance, would impugn a person's dignity and which would be part and parcel of the person's sense of self, and which would be easily shrugged off or accepted with gratitude? Are there any principles here?
What in "nature" can we change or do without and what have we reasons to protect and preserve in its spontaneity or contingency? (Consider the question whether immortalized flowers (there are such things) can be beautiful. What is the relationship between the "naturalness" of a flower and its beauty as a flower-e.g., its connection to evolution, wildness, mortality, etc.?)
To what extent should we manipulate ourselves and our children through drugs rather than through discipline? What can be said for and against pill power as a substitute for will power?
How much of all this (genetic engineering, etc.) is just science fiction? To what extent are we just freaked out by Nietszchean fantasies or seduced by our self-importance as bioethicists?
Applied Research Questions (Public Policy, Clinical and Research Issues):
A. Public Policy/Legal Issues
What are the implications for personal identity - both positive and negative - of using genetic information to clarify individual identity or disease status? (e.g. DNA fingerprinting can be a method of safeguarding individual identity, better than handwriting to prevent identity theft, forgeries, etc., it can also be used to breach individual privacy and have unwanted or negative effects on concepts of identity. Also, the identification of individuals with a genetically determined disease or condition has benefits to the extent that diagnosis or treatment is possible, as well as potential disadvantages to the extent that stigmatism is the result. The latter is aggravated in cases where there is no cure.)
What are the implications of the current tendency to inflate the capabilities of new genetic technologies in criminal investigations? How does this tendency interact with the apparent reluctance to adopt continuing new discoveries because they raise doubts about previous techniques?
What are the implications of the potential to create and use large genetic databanks in the surveillance of the whole population? How can the conflict be resolved between the potential for government control over individual lives and the advantages of using genetic technologies to safeguard individual identity?
What are the personal as well as financial consequences of using genetic information to clarify the identity of parents (primarily fathers) and other family relations?
What role does genetics have to play in defining group differences? (Need to examine the conflict between fact that there are biological differences between relatively well demarcated racial groups and the discomfort that many feel in admitting this obvious fact.) To what extent are these differences relevant to the social dimensions of race?
How is new genetic knowledge claimed as a scientific basis for the identification of group differences resulting from common ancestry or in-breeding, otherwise known as races or nationalities?
How is it that what was for a long, long while the radical/liberal position - race has no biological reality - is now being perceived as the conservative position? What has changed? What is at stake? What are the various stakeholders seeing that the others aren't? (The current political side-switching in the discussion of race and genetics HAS to be tackled and preferably by an historian or historian/ anthropologist mix.)
Is race biological or social? But the larger question for human survival is not whether it is biological or social, but why do we care at all about differentiating people by characteristics, and then so often treating one group, the one that is not "ours" so badly because of whatever characteristic we don't like? (On the level of more macro questions to which the science of genetics contributes in various complex ways is the question of the seeming need, desire or propensity for humans to categorize one another, the "us" and "them" phenomenon, and now we have genetics to help us, supposedly.)
Diversity is a wonderful thing. Will genetic manipulations serve eventually to decrease the overall amount of diversity in the world? Or are those countries wealthy enough to engage in such practices such a small minority of the overall population that it will basically have no effect? For racists (of any color) disposing of "undesirable" populations is a millennium-old practice. Will this practice be refined into disposing of "undesirable" genes? Get rid of the genes but keep the remainder of the person.
China provides an appalling example of manipulating birth outcomes (40,000,000 excess males to date). What comparable imbalances might we anticipate?
Today many lack access to basic health care. How can our system provide just access to genetic innovations?
Will new genetic advances exacerbate existing social disparities?
What forces might determine the distribution of the medical benefits of genetic research to the world's poor and marginalized.
How will we make sure that delivery of information respects the needs of communities respecting their varied world views?
How do different cultures understand and use genetic information?
What does the public still fear about genetics and how can those fears be addressed?
How can we better enable young students to understand the ELSI issues involved in genomics?
Can public policy regarding genomics really have a positive impact on human health?
What is the impact of the genome project on the use and misuse of human capital in the marketplace? (i.e. individual's interest and ability to obtain training, achieve employment objectives and realize their potential in their area of training.)
Who owns gene lines? Can rare genes (or even non-rare genes) be patented? Where are the rare genes coming from? How are the "rights" of the possessors protected? If my sister sells the family's longevity gene to one company, can I sell rights to it to another? Can one group (who has a valued gene) determine who else (what other group) may have that gene? If the decision is not in the hands of the originating group, in whose hands is it? Is sharing my genes without my consent an issue?
What are the legal, historical, social, and moral purposes and uses of patents, and how does this relate to patenting genes?
Who determines whether genetic engineering will occur for a minor?
One hopes that dabbling with genetic engineering will be done slowly and rationally. However, how do we determine whether two genes (or four or five or ten) will merge harmoniously and leave an individual better off? Interactions among variables are infamous in every discipline. On whom would the research be done?
If a gene transplant doesn't work as anticipated, whom can I sue? If my parents determine that I should be engineered (without my consent - perhaps because I'm in utero), whom can I sue? If my parents decide not to engineer something that might have been done, can I sue them?
What institution should regulate genetic technology and its application to human beings. If a new agency should be created to regulate what is done to and with embryos, what would such an agency be like? (The Food and Drug Administration does not seem to have the mandate or the measures to regulate genetic engineering.)
B. Clinical Issues
What is the impact of genetic information on individuals' perception of lifetime risk for major diseases (e.g., cancer, heart disease, diabetes)?
How are genetic testing options presented to the public and how does this influence decision-making? (e.g., direct to consumer advertising, to professional society statements on Dr.-patient communication on the value of testing.)
How does knowledge of one's genetic predisposition to disease positively or negatively influence one's attitudes and practice regarding risk reduction behaviors?
To what degree are promised and putative advances in genetics wrapped up in a foregoing and ongoing paradigm of risk and prevention? Is this a strictly "American" paradigm? In other words: How much does it depend on an upper middle class life with an "open future?" How much does it depend on a covert but implicit view of death as optional? What have been the effects - the potential societal morbidities - of this risk delineation/ prevention model of which genetics is the farthest pole?
Do the increasing inroads made by genetics into all kinds of "regular" medicine through pharmacogenetics; through genetic contributions to common diseases; through more and more genetic information gained through tests that are not clearly "genetic" tests; change the ongoing debate over genetic exceptionalism (i.e. the concept that genetic information and technologies are somehow different, more significant or have a more profound impact than other medical information and technologies)?
What is the practical significance of the genetic "revolution?"
Who will have the ethical responsibility for examining all of the possible medical applications? Clearly the group must be expanded even beyond the current IRBs.
C. Research Issues
What are the proper limits on human experimentation? How can these limits be defined and enforced? How can we avoid treating humans as experimental animals?
What areas of genetic research have higher priority than others?
What genetic research areas have higher and lower priority than other areas of biomedical research?
Should genetic enhancement research receive public funding? What about projects that could yield knowledge relevant to enhancement but that target illness-related issues?
Do women face special risks associated with further research into such areas as cloning and stem cells that may necessitate harvesting large numbers of eggs from women?
Underlying Concerns and Suggestions:
The perspectives of the humanities, in particular, do not generally lend themselves well to measurement of immediate success, nor to the proposition of specific policies. The impact is more likely to be indirect and akin to basic research in science, that is providing findings that may be used in unexpected ways.
It might be interesting to ask ELSI applicants to address the question explicitly: What will be the best measure of the success for this project? It should be possible for every ELSI project to define one or more questions(s) for which the project provides an answer.
Because the product of projects in this area will largely be discourse and publications, this may be an area where mechanisms should be explored to insure collection of all outcomes of the project, including descriptions of public presentations, newspaper coverage, etc.
Number and Quality of Publications:
Number and quality of publications is a primary indicator of the success of any academic project and should be an extremely important measure of success for ELSI humanities projects. Researchers produce research. The ELSI research program should be about that, first and foremost.
Presumably the number of publications and their citation would be one measure of how well this research has been produced and how the results have been used by others. One method of influencing research long-term, which is measurable in the short term, is to establish doctoral research grants on this subject. This not only will produce research but possibly encourage continuing work on these topics in the future.
Citation by scholars of the published work of a grant is one measure; perhaps how broadly, not just how frequently something is cited matters - in journals and books read by people of different disciplines, not just by people in one discipline. I also agree that whether an article or book chapter or book appears in a course syllabus should matter, but without having everyone submit course syllabi to something like the Georgetown Kennedy Institute Bioethics database, there is probably no way to know about this. We could urge that people teaching ELSI-related courses submit syllabi and see whether the published work shows up on them.
The primary measure of success has to be the same as it would be for any academic work - does the grant yield the products promised, generally books and articles.
Success should be measured in standard ways; i.e. the number and quality of publications, and whether clinicians, researchers and policy-makers take account of the work (using such indirect/imperfect measures as number of citations.)
Books or monographs are the usual outcome but these may take years to see print and even longer to know if they are any good. Can we come up with a new paradigm here?
There is a culture clash between the humanities world and the "hard science" world, with social science somewhere in the middle as to whether the book or the article is the gold standard of "success." A related issue is one of measuring "influence." Whereas the impact of the basic science article can be judged by how many times it's cited in the citation index, I don't think this is a good measure for humanities and social sciences, primarily, I think because these fields don't build on previous work in quite such a linear fashion. I have had many people tell me, for example, that they have used something I've written in teaching; that is enormously gratifying and I have to think that is a measure of the influence the work may have on a general conversation on the topic - but it will never show up in the citation index.
Peer-reviewed journal articles have the most validity and carry the most weight in the scientific community. Translating these to accessible readings for the policy audience is important.
I really don't think that the number and quality of publications tells you much. The number is interesting, but who is reading them is more important. And who would be the arbiter of quality? So I think you have to try to do this, but I wouldn't rely on it as a sole source of measurement.
Academic products are helpful, but if ELSI were to require a two- to three-page summary of project results two years after each grant was completed that might be very helpful. Such summaries help indicate a gross outline of the field of knowledge, and provide bibliographical pointers for relevant articles that came out from a particular project. This kind of report would also provide a logical focus for press releases. The "report" makes news, and it does so at a time that the researchers actually have something to report.
Development of a community of experts:
Development of a community of experts is extremely crucial and has been a primary contribution of the ELSI program. It is difficult to measure the quality of the expertise developed and the accessibility of it to others. Nonetheless, perhaps these two items should be co-factors of concern in any assessments of success of the program.
While I think the development of community experts is also a crucial activity this is a hard thing to measure. Who is an expert? Is it someone the NHGRI thinks is suitable or is someone who understand these issues no mater what their perspective is? Also given the way people move in this country it is difficult to maintain community experts and therefore this will have to be an ongoing process.
This is not a particularly good measure. One can always shop for an expert that will say the things you want to hear.
Broadening or Enriching Discourse:
Two signs of success are: conceptual clarity in the discussion and a sense of proportion. ELSI has done a terrific job of calming the waters, for example, by debunking genetic determinism, essentialism and exceptionalism. The important thing will be to avoid a lot of high-flying rhetoric about the meaning of it all, if that gets in the way of addressing particular clinical needs and issues. It will be helpful to have a vocabulary, for example, that allows us to deal with such questions as what counts as therapy and what counts as enhancement in clinical contexts. Successful research will ground public debate in real clinical possibilities and prospects. Larger ethical and philosophical concerns become relevant when they are directed to current or foreseeable clinical possibilities and technologies. Conceptual clarity, as always, is the object.
Any demonstration that researchers had begun incorporating 'worldview' considerations into their research design or interpretation should be considered a measure of success. As would a demonstration that the discussion between those in the humanities that are interested in this area, and genetics/genomics researchers, was reciprocal. Publications on their own are not a good measure of success.
For some issues, the best measure of success is simply that discussion involving diverse viewpoints has occurred. Thus, for projects attempting to explore different points of view about issues of genetic identity, the most important measure will be publication and public presentations. For others, notably historical reviews and legal analyses, the measure will be similar - publication - but the product is an accumulating body of knowledge available to the ELSI community.
Measurable impact of research findings on furthering discourse is very important. Validated surveys pre- and post-program would really tell you if these ideas landed on the radar screens of targeted audiences.
Impact is important. MEASURABLE impact is more difficult. It is extremely difficult to measure this kind of impact in a rigorous way, for both theoretical and methodological reasons. Citation indexes just don 't do it. Increasing discourse in each of these communities is important for different reasons, and ELSI's role in this is an important, if secondary measure of success. How much should be spent to measure these?
I would expect clear articulation of the aspects of the world view that are relevant to the genome, dialogue with the communities in question, interaction with the leaders of those communities and products for the community (either research or policy) as needed.
As for measuring the impact on research findings and further discourse I don't know how that can be done effectively. What would be measured and how would it be measured? If you can come up with some quantitative/qualitative analysis it might be possible, but these seem to be rather fuzzy topics that are hard to measure.
Public Policy Impacts:
Public policy development is not something that academic groups can do without violating the democratic process. Humanist academics rarely have direct access to health policy. There can be some access to research policy, so that might be a reasonable goal and hence component of success to be measured.
Policymaking is not the goal. Widely read books, well attended public lectures, innovative university curricula, stimulating workshops, greater involvement of young scientists are all worthwhile goals.
The real measure of success for this research is how it translates into policies that influence public health. The development of a roadmap linking ELSI research to policy and outcomes would be helpful.
Success of this type of research should be measured by an assessment of how the knowledge generated will help clarify the issues among all stakeholders and not only among scholars. High marks should be given to research that is translated into fair and just policymaking and that contributes to well being in society.
I think it is extremely difficult to measure the success of worldview research, but it is becoming increasingly important to do so. I believe that the development of actual health and public policies is most critical and may be the most difficult. I have this view because I think this is the most practical outcome of this research and I think we have an obligation to create such products.
One particularly impressive article on the question of expert legal testimony on questions of identity, is Michael J. Saks, "Merlin And Solomon: Lessons From The Law's Formative Encounters With Forensic Identification Science," Hastings Law Journal (1998), 1070-1141. It not only identifies many different ramifications, but it also provides a broad ethical and historical perspective on the issues.
On "big think" issues, those related to distributive justice were clearly handled in Buchanan, et al., From Chance to Choice, among other essays. Likewise, essays by Eric Juengst comparing different ways of improving people. I admire essays and books - by Tom Murray, Dot Nelkin, and many others - debunking genetic exceptionalism, determinism, and so on. Lewontin's contentious essays contribute to this important exercise. The theological literature represented by T. Peter's project helped me understand the openness of theology to the prospects of science. Other writers help with understanding the difficulty of the distinction between enhancement and therapy. There is an essay by Jurgen Habermas - "On the Way to Liberal Genetics?" - I thought was clearly written.
I use all sorts of things; many of the books, med journal & bioethics journal (e.g., Hastings Cent Rep) articles and Web reports. I just finished teaching a semester-long class on The HGP, Ethics & Law and used many of these sources.
In respect to worldview issues (as I conceive them), books would seem likely to have the most impact. Two that I found particularly helpful, in quite different ways, were "The Worth of a Child" by Thomas Murray and "From Chance to Choice" by Allen Buchanan, et al. (Both are ELSI-funded investigators, although I don't know if the Murray book had program support). However, the book that had the profoundest impact on my thinking about ELSI-related issues (disability) was actually "Rational Dependent Animals" by Alasdair MacIntryre, a philosopher who may never have heard of the ELSI program. Another reason to widen the circle.
The report that Toby Citrin and his group produced out of the "Engaging Minority Communities in Genetics Policy Making" was the kind of product that I think would be most helpful. They did specific research that involved the public and came up with specific policy recommendations.
It seems that the impact of scholarly publications in this area is quite slight relative to magnitude of the issues.
RECOMMENDATIONS FOR INCREASING RELEVANCE & ACCESSIBILITY
In reality, ELSI has done a pretty good job of being accessible and relevant to the general public. The question implies that there is some kind of evidence to the contrary. Perhaps that should be articulated, along with the hidden criteria by which that judgment is reached. The research has had some impact on public policy, within the limits of the political process. It has had less impact on health care policy, due to economic limitations. These barriers are hard to overcome.
For ELSI research to be at its best, it should be sufficiently informed by knowledge of the science that it is not just taking a longstanding moral or social science question, as intriguing as all these are, and embroidering it with a little genetics to make it contemporary. Perhaps these important questions would be exactly the same with or without genetics, but those of us interested in the philosophical and social questions need to know how genetics makes them different from what they were before we had the capacity to know some things about ourselves from our genes.
With respect to the "world view" issues, I doubt that we are ready to ask these questions. It is difficult to find effective activity even in academe. Until it happens there, it is premature to worry about disseminating it.
Front End-Relevance of Research to Other Communities:
NHGRI should require an ELSI researcher on every funded grant project that involves human subjects. As a first step, internal projects should have this, then later external grants. The only way for ELSI research to be integrated with the scientific research is, well, to be integrated with the scientific research. An ELSI research person can help strengthen research design, which will produce better research, and can increase the likelihood that genetic researchers will come to have an appreciation for what ELSI research could do to produce better bench research.
NHGRI should offer a training program in genetics for humanists. Some humanistic scholarship in the area is weaker than it should be because it is undertaken by scholars who have strong expertise in their area, but lack a solid background in the genetics and the biology of organisms as a context for genetics. This could take the form of summer workshops at NIH or year long, more thorough training at the scholars' home or other institutions. A bench component is essential.
Development of advisory boards to ELSI might be useful. One should consist of people doing various kinds of human genetics research, another should consist of health policy or health administrators. A third should consist of lay, non-academic people or a combination of those people and people doing research with various public groups on genetics.
Front-end activities could include: focus groups with stakeholders, such as health plan administrators, physicians, and (important) the media. These groups could help you identify ways to disseminate information for back end activities.
NHGRI should ensure that the efforts it stimulates in this area parallel its scientific research efforts, which are (for the time being): genome sequencing and annotation, genetic variation, functional genomics, and related technology development. While the effects of these advances on medicine and biological knowledge are far-ranging, there needs to be some self-imposed discipline in choosing what 'worldview' studies to emphasize. In addition, these studies, or at least a significant proportion of them, should be aimed towards genetics/genomics researchers and clinicians, rather than the lay public; the reason is that such studies will be more effective and useful to the extent that they are understandable by, and usable by, genetics and genomics researchers in the design and interpretation of their studies, and in their representation of them to the public. This will help make the research more relevant.
It would be good if there were more publicity to the popular media and research community--how about ELSI program press conferences? I consider work with researchers & physicians an important measure of success as addressed in question (2). But making this group aware and actually interested in working with ethics and policy people are separate steps--too often it seems to be for PR purposes.
In order to ensure the accessibility and relevance of ELSI research, members of other communities must be active participants in research from the beginning that is from the selection of the topics and the actual design of research through to the application of results. Specific steps for NHGRI would be to reach out to diverse communities, listen to their needs, and support research suggested by them.
What about commissioned work?? Can that be done?? What if individuals were commissioned (or contracted with, or "cooperative agreement-ed" or whatever), to do work equivalent in effort to an RO3, that would analyze and produce a written piece on some of the topics that this workshop will find essential? One could then come up with an on-going dissemination mode - like white papers - that would have the imprimatur of NHGRI (but, of course, with a disclaimer as to the specified opinions expressed, etc. etc.)
Back End-Accessibility and Integration of Findings:
Sustained efforts need to be made to make ELSI researchers in specific areas accessible to the media.
There needs to be an ELSI journal. Current ELSI work is scattered to the winds. If there were a journal, it should include a "research in brief " section that overviewed research from other journals on ELSI. Right now, we all spend half our time flailing around trying to find out what other people have done. The journal would make this more accessible both to researchers in the area and to news media, policy folks, and others who might have an interest.
An annual ELSI bibliography would be very helpful.
A bibliography, perhaps with some kinds of annotations, available of ELSI-related work, should be made available on the website and other places. Annotations would be important, not just topical listings, because many projects that appear to be on one topic actually include ideas and data relevant to other topics, so good descriptive work about topics and methods within an article or book might be very useful.
The NHGRI Web site already provides a good mechanism for making results available. Perhaps it would be helpful to add additional structure that makes it easy for people to find specific topics, including strategies to make the ELSI sections more searchable; and, with greater efforts to capture products, there will be more information to post.
An ELSI Web site that highlights "new" research results might be useful to the media and other researchers. Something like NSF's public understanding of science Web site. (http://www.nsf.gov/sbe/srs/seind02/c7/c7h.htm)
One particularly effective model to emulate is the use of a humanities rubric in scientific journals. For example, the American Journal of Public Health has a historical section "Public Health Then and Now" where important articles have appeared which provide an ideal place for scientists to have access to humanities research.
Research results should find their way into different levels of publications, including those addressed to specialists as well as general public.
Discussions of "worldview" issues may succeed best as informal essays written in a popular style. A little humor would go a long way in leavening what is otherwise a field that can grow lumpy with grand visions and anxious portents.
In general we need to have more user-friendly documents on these complicated topics. By that I mean, short, to the point documents written for the lay public. That does not mean we shouldn't have scholarly writing I just think it needs to be better translated for the average reader.
Some of this work needs to make it into the mainstream media so that the general public has a chance to think about some of these issues. This can be done in the form of OP-EDs and freelance pieces for magazines. There may also be some way to work with the media to see how best to make some of this work more news worthy. Maybe some science press could be brought in for a discussion about how they cover such issues and so some of these ideas can be pitched to them. It will also be important to provide community forms to talk about such topics. This has been done with some success by others and those successes should be used as models for other communities. The NHGRI might also think about writing short two pagers on various worldview topics that could be used as the basis for discussion for the public. The research the ELSI program is funding should be translated in this way to make it as simple as possible to use.
Dissemination through advocacy groups, community centers, faith communities. Placement of articles in journals accessible to the public - Utne Reader, New Republic, New Yorker, Mother Jones, New York Times Magazine...
White papers - distillations of the central concepts resulting from the research would have greater accessibility to the hybrid, or crossover community one would hope to impact with such research.
Educational materials for health care professionals and the public can a have big impact. Understanding genetics, genetic-based medicine and all the limitations involved would bring all to the same level.
The ELSI program should be looking for opportunities for workshops or sessions at national meetings that would provide opportunities for presentation and discussion.
It might be useful to use the method of summer courses, along the European model, to encourage interaction and disseminate findings. These "courses" lasting 7-10 days in a relatively isolated location, bring together experts who present their research and lead discussions with other scholars and advanced graduate students interested in learning more about the latest research, even before publication. These extended meetings usually result in a publication. One could imagine 2-3 of these summer courses on topics found to be especially important.
The conference modality might be better used. IF one could convince/ entice/ ensnare the genetic scientist community to be present at such venues as Cold Spring Harbor or Airlie House and have material from ELSI projects presented NOT as "ELSI is the brake pedal trying to stop all your work" but rather, "Don't you want to have us (we who have spent our lives learning how to think about these issues as historians and philosophers) help give you tools and ideas to think about the broader implications of your work? Framing it as an invitation for collaboration, rather than an opportunity to preach or scold would help.