The Century Foundation
New York City

Hosts

Leif Wellington Hasse, Program Officer and Health Care Fellow, The Century Foundation

David Callahan, Director of Research, Demos

Presenters

Marsha Tyson Darling, Ph.D., Professor of History and Interdisciplinary Studies and Director, Center for African-American and Ethnic Studies, Adelphi University

Richard Hayes, Ph.D., Executive Director, Center for Genetics and Society

Sheldon Krimsky, Ph.D., Professor of Urban and Environmental Policy and Planning, Tufts University; author, Science and the Private Interest

Susan Lindee, Ph.D., Professor of History and Sociology of Science, University of Pennsylvania; author of Moments of Truth: Genetic Disease in American Culture.

[LEIF WELLINGTON HAASE] I'm Leif Wellington Haase, a Program Officer and Health Care Fellow here at The Century Foundation. On behalf of The Century Foundation, I would like to welcome all of you to this symposium on equality, democracy and the new human biotechnologies, a threshold challenge for the 21st century. We're fortunate to have a tremendous panel here today to discuss these important issues. The Century Foundation, as many of you are aware, is very interested in issues of inequality and security, whether it's health policy or social security, pension reform or election reform, or any of many other issues. We're especially interested in things that affect the present, like sex discrimination based on gender. We're also interested in many genetic issues that may happen over the horizon. The panel is very interested in creating constituencies of interests on these issues and we've obviously gotten off to a tremendous start with the group we've put together. I'd like to turn the discussion over to David Callahan, research director of Demos and cosponsor of this symposium, and moderator and third sponsor Richard Hayes, Director of the Center for Genetics and Society. David?

[DAVID CALLAHAN] Thanks. Demos is happy to be co-sponsoring this event. Thanks to the Century Foundation for hosting this event and making it possible.

Since 9/11 it's often been said that we live in crazy times and indeed I think we do. The United States is at war with two countries with the very real prospect of a generation-long struggles against militant Islamists. But these times are also frightening because the future seems to be rushing at us so quickly these days. Just when you thought globalization couldn't accelerate any more we get a full new round of outsourcing of jobs and whole new kinds of jobs we send overseas. Meanwhile, demographic shifts in the United States are rapidly accelerating. In just six years baby boomers will start to retire in 2010. One out of three Americans will be non white.

Technological advances are also rushing at us. In this area we are talking about today, new human biotechnology has profoundly important consequences and requires very much attention. Demos is interested in new technologies because the two things we care about the most are economic equity on the one hand and strengthening democracy on the other hand. These technologies have the potential to go forward without real democratic control and to also really change the nature of human beings in the long term, thus creating new inequities and forms of discrimination. One of the scary things about this moment we're living in is that even as the future rushes at us we're told that government can't do a lot about things. Public trust in government is very low; there's not a lot of faith in public policy; deficits stretch as far as the eye can see; and we're told we can't do anything.

I have been very fortunate to have gotten to know Richard Hayes, who is our moderator today and the Director of the Center for Genetics and Society. He is convinced that we can do something about this technological change that is occurring; that we don't have to be passive to let the market figure this out and Richard has led an almost a one person crusade to put this issue onto the agenda to galvanize constituencies on both left and right to care about this. I'm really impressed with his work. To say a couple more things, the Center for Genetics and Society is a nonprofit information and public affairs organization. It's working on the implications of these issues. It's relatively new. Richard is a long time activist in the environmental movement and the justice movement. He brings tremendous skills to this cause, and without saying anything further I'd like to turn this over to Richard Hayes.

[RICHARD HAYES] In turn I'd like to express my appreciation to the Century Foundation and Leif, and to Demos and David, for hosting and helping to organize this event. I want to make a friendly amendment to David's comment about a one-person crusade. We began with several dozen at our first event, and over the last few years hundreds of people have become involved for the first time in addressing the issues raised by the new human genetic technologies. And we're hoping that through events like today's, perhaps some of you might be inspired to become more engaged as well.

We'll talk more about this after the presentations. We'll hear from my three fellow panelists, and me as well, followed by discussion. We're going to break at two o'clock. Be sure to get in touch with me or any of the panelists, or with David or Leif, to talk about keeping in touch. Be sure to get your name and coordinates on the sign up sheet as well.

So now let me introduce our panelists. Our first presenter is Marsha Tyson Darling, Professor of History and Interdisciplinary Studies at Adelphi College, and Director of the Center for African American and Ethnic Studies there. After Marsha we'll hear from Susan Lindee, Professor of History and Sociology of Science at the University of Pennsylvania. She wrote the book Moments of Truth: Genetics Disease in American Culture and co-authored The DNA Mystique: Gene as Cultural Icon. After Susan we'll hear from Sheldon Krimsky, Professor of Urban and Environmental Policy at Tufts. He is author of several noted books, including most recently Science and the Private Interest. I will be wrapping up, and then we'll open discussion. So… Marsha.

[MARSHA DARLING] Well, greetings. I also want to take a moment to thank Demos and the Century Foundation for hosting what I know, given the work I've been doing in recent years, is a critical symposium on significant issues in our contemporary lives. I also thank all of you for giving up a preciously nice day after some pretty intense weather days to come, sit, listen and hopefully talk with us.

We talked earlier today and we agreed that I would spend a little time talking about Eugenics. No doubt many of you in this room know something about eugenics and maybe many of you know a lot about eugenics, but I don't think some of you have given some thought to the fact that eugenics is taking form in our contemporary lives. That is what I will devote a few minutes of my time to discussing. Obviously, I don't have the time for a more in depth discussion. There is a paper that my comments are taken from on the website for the Center for Genetics and Society, so if you'd like to see the entire essay entitled Eugenics Unbound: Race, Gender and Genetics, please look it up.

Now more than a century old, eugenics initiatives have remained attached to our scientific practices that have affected women, people of color, the disabled, and the poor. Eugenic policies and general practices have consistently intensified social inequalities, especially for socially marginalized groups. Further, through much of the twentieth century, neo-Malthusian beliefs, values, policies and programs have played a prominent role in furthering the design and use of population planning interventions. For example, surgical and non-surgical clinical sterilization, birth control pills, insertable contraceptives devices, injectable contraceptive drugs, physician surgically inserted contraceptive drug pellets, and immuno- contraceptive anti-fertility vaccines, have been clinically tested and brought to market after trials and errors, particularly in global South countries. There is a long history of experimenting on vulnerable or marginalized populations using risky and invasive clinical trial protocols.

For those of you unfamiliar with the term Eugenics, it's a term coined by Francis Galton in the late nineteenth century, and it means "well born" in Greek. Eugenics it has been used to posit the existence of linear hereditary biological endowments that separate human beings one from another. Importantly, eugenics, a pseudo-science, always promised to provide a mechanism to distinguish "fitness" between individuals and groups of people. In fact, eugenics has functioned to do exactly what it has been socially constructed to do, namely, to strengthen existing racial, gender, class, ability and ethnic, and religious intolerance. Eugenics has also sheltered and nursed along an elusive quest for the perfect race or group of people. Eugenics was and continues to be so powerful an idea because initially many educated elites and then many others have used it to explain, justify, sustain, and subsequently intensify existing group oppression and marginalization. Many unfamiliar with eugenics sordid past or the influence of perverse theories of biological determinism often argue that the creation of scientific technology should be separated from how technology is used.

Eugenics abuses of marginalized socially excluded groups have historically intensified social justice inequalities precisely because the historical problem of selectively isolating science from social context pretends that the abuses present in society's social contract were disassociated from the development of science in the first place. Biologist Jonathan Mark's insights on this issue are instructive, and I quote him: "Connecting the hard and soft sciences, however, is a bridge of pseudoscience…. When Darwinism emerged it was applied to human behavior by Galton (and independently by Spencer and others). But the application of an advance in science is simply a means of validating the social programs that actually preceded it. Galton's program differs little from Gobineau's or from any other social tract of the nineteenth century that saw the wrong people proliferating and the destiny of civilization localized in their constitutions."

If social context is always present, then science is always part of existing social contexts, whether or not we admit to it. Ideologically, state eugenic agendas have often been enticing to those groups who have not been historically marginalized or excluded, or worse, openly persecuted under state eugenic directives. Eugenics agendas in society have always been cast in best case optimal result scenarios. Witness how the media spins much of what we are exposed to about the optimal promises of biotechnologies. Just as now, in the opening decades of the twentieth century eugenics was promoted as responsible science and sound public policy.

Eugenicists initially attached themselves to Darwinism and selective breeding. Later, eugenicists attached their social constructions to Mendelism and the inheritance of "socially desirable" traits. In truth, many were seduced by the science and medical community's promises of improving humanity's hereditary stock. Further, contemptuous of the poor, racist politicians, ministers, intellectuals and scholars were drawn into an ideological fraternity that channeled their energies into restricting access to the nation by nonwhite, non-Christian, western European immigrants. Eugenic zealots also sought their most enduring impact on society, namely, the practice of impacting the exercise of reproductive rights for many thousands of politically, economically, and socially marginalized Americans. In an age of virulent racism, strong xenophobia, and religious marginalization and intolerance, eugenicists took hold not only of concerns to limit, curtail, or restrict biological reproduction of mentally impaired men and women, but also sterilization of thousands of people of color, many who were disabled, prisoners and many asylum patients. In the same decade in which the Restrictive Immigration Act of 1924 was passed, an institutionalized eugenics-driven restrictive immigration policy, Eugenics thinking took hold of the infant United States Public Health Service, furthering racist notions of a biological binary between the races.

The infamous Tuskegee experiment happened because white public health officials were influenced by scientific racism and eugenic beliefs that brown skin translated into biological differences that in the minds of many white medical professionals produced black hereditary inferiority. Essentially, a belief in black inferiority formed a policy that shaped the manner in which medical and scientific racism was applied. To date, the Tuskegee project is the longest experimental project in history with human subjects and involuntary consent. Hence, historical records reveal that the racist and sexist social constructions of the nineteenth century molded by the power of proslavery ideology, various defenses of slavery, and by the nativist, pro-white, Protestant, western European ancestry-based anti-immigrant movement, shaped the social terrain in which scientific racism and eugenic thinking grew well into the middle of the twentieth century. State sponsored and imposed eugenics was only curtailed following the demonstrative debacle of the Nazi genocide against Jews, Roma, lesbians, gays, the disabled and political prisoners in Europe, and the Nazi transgressions against Heroro people in Africa. Even so, well beyond Nuremberg, state sponsored Eugenics continued in the United States, where between 60,000-70,000 Americans were involuntarily sterilized.

In the short time I have remaining let me summarize a two-part argument. The principal argument I would make is this: In the opening decades of the twentieth century, initial attempts to secure the right of contraceptives use on behalf of married heterosexual couples, were advanced along with an emerging birth control movement. At that point, on the surface of things, many professionals saw this as an opportunity to mold public policy to help empower middle-class White American families, while the seamy eugenics underside of the policy supported race based state-sponsored segregation in the US, apartheid in southern Africa, and colonialism elsewhere in the global South. Population planning programs were instituted for people of color in the United States as well for the global South. For those of you who would like to know more about this reference Loretta Ross' account of how the Birth Control Federation organized something called the Negro Project in 1939 designed to target and sterilize poor southern blacks. Government funded eugenics projects attempted to reduce the already declining numbers of Native Americans. Also, beginning in the late 1930s in Puerto Rico, eugenicists sought to sterilize over one third of the women in Puerto Rico in something called La Operation. It was funded by private US organizations, and by the US and Puerto Rican governments.

So, the first argument I make is that while on the surface of things, historians reflect on the opening decades of the 20th century as a period of unprecedented progress in scientific and technological advances, the social inequalities that were deepened and exacerbated, the lives trashed, lost, even deliberately destroyed, really do require us to more fully comprehend the social constructed ideas and beliefs that decade after decade supported racist or intolerance based social policy and the uses to which science was put. After all, for eugenics to have maintained the stranglehold it exercised over the minds of so many educated people, as well as millions of laypersons, existing dualistic and oppositional constructions of presumed innate and unequal biological difference and "superiority vs. inferiority" contributed mightily to hate based systems of private and state based and endorsed discrimination. The greater privilege that accrued to those not deemed "unfit" must have assured that many worked to support a place for a "science" or "pseudo-science" that fit the purpose of explaining why systems of oppression (namely, social systems that establish or accept group based discrimination to deprive some of rights, while according another or other groups privileges) were inevitable, necessary and acceptable. In such a manner, eugenic pseudo-sciences attached itself to technological development and to what was perceived as the very best of policy planning on behalf of middle class, Christian, White American families.

In terms of eugenics, the array of pseudo-sciences and private, institutional and state based discrimination dominated the social policy of most of the 20th century. We are accustomed to thinking about eugenics in terms of the Nazi excesses, but dating from the mid-20th century eugenics has remained attached to population planning policies directed at poor women of color. Reflecting on developments dating to the post W.W.II era, we have come through several decades of a very strong pro-natalist, fertility enhancing, policy directives for white couples in the global North including the US and western Europe, and fertility reduction efforts, whether through NGO's, international development programs, or the provisions of treaties which have pilot tested depo-provera, norplant rods, quinacrine sterilization, or most recently field tested in India, an anti-fertility vaccine. Arguably, a sole focus on reducing fertility without increasing the socio-economic status of the poor does not work, as the principle reason the poor have more than a small number of children is to increase their life chances and economic productivity. Redistributing wealth would go a long way towards actually intervening in the spirit sapping poverty we see in many places in the world. But, then again working to tangibly redistribute wealth deriving from global South "capacity building resources" would intervene to reverse the legacy of slavery, imperialism, colonialism and neo-colonialism in ways many in the powerful global North are not inclined to support, not because it would seriously undermine the economic power white people hold over people of color, but because it would signal an agenda intent upon minimizing discrimination and promoting equality, equity and democracy. The resistance to promoting human equality and equity will require a scientific or technological intervention that can and will further exacerbate existing social inequalities. That is where we are now.

Note that the dominant paradigm in use in the scenario described above is one that situates "superior," and "developed" as oppositional to "inferior," and "under or undeveloped." This dualistic frame of reference has through several centuries of the enclosure movement that we are living empowered or privileged some while disempowering those designated as the "other." Quite simply, the argument I make is while progressive forces have discredited and rebuked the uglier face of eugenics, namely, explicit state sponsored eugenics, eugenics as fertility reduction for poor women has survived clearer scrutiny.

The second part of my argument that I hope I have a few minutes to comment on suggests that the illusive pursuit of "perfection" continues to be one of the illusions eugenics offers. Here one sees the bridge between state sponsored eugenical promises of improving hereditary stock and the more recently minted promises of creating "designer babies," who will presumably be better than much of existing human stock. Couched alongside promises to use genetics based technologies, products and services to eradicate chronic and debilitating diseases, eugenics is now being promoted as a consumer, market based intervention. Packaged as a "choice" option in a world increasingly preoccupied with an individual's right to possess anything money can purchase, many in the biotech industry are part and parcel of an effort to use the largely unregulated areas of scientific endeavor (such as in vitro fertilization) to pioneer genetics based products and services that promise genetic enhancement. On the surface of things this might sound rather innocuous, but I have time to offer you one example of a protocol that exacerbates social inequality (which was always one of the functions of eugenics), by what I would suggest is the misuse of genetics based technology.

Consider that one of the very specific and profound ways eugenics is concretely with us now is PGD (pre-implantation diagnosis). Here we are dealing with the two-tiered use of PGD. One use of PGD is to identify harmful or chronic genetic markers in embryos, followed by a woman or couple making a decision about whether to abort or birth an embryo with such markers. Initially developed to diagnose cystic fibrosis, PGD has garnered what in my opinion is a much more morally troubling market application. As we speak, a more perverse and destructive use of PGD is being practiced in India and in at least one medical facility in Chicago. Reports from areas across India indicate that PGD is being used to practice sex selection. The South Asian community in the United States is also being directly targeted for marketing the sex selection use of PGD. Here we have the use of an "enabling of disease prevention technology" being use to enable technology-facilitated female feticide. Persecution of females is the oldest oppression, worldwide in its reach. Now, western technology leads the way in marketing an eugenic application of genetics based interventions -- female feticide -- whereby the technology itself is used to identify and discriminate against female fetuses. Now this goes again to the legacy of eugenics, as we see the impact of sex selection PGD in India, the demographic imbalances it has already produced, and also the impact of PGD on sex ratios in the People's Republic of China.

Aside from my moral repulsion to the use of sex selection technology, let me suggest a
specific legal complication related to sex selection technology in the United States. I would put this on the table as one of the very concrete specific ways we should bring us up to speed more directly with knowledge of this, and intervene with prohibitive regulation. There are compelling constitutional issues here, namely, 14th amendment, equal protection clause issues.

So in closing, let me just say that with a century stretching out in front of us, with distant vistas based on privatizing genetics products and services in the sights of those in the biotech industry, it seems to me we are on the threshold of framing an important set of decisions, constructing new privileges and articulating new rights. With these heady and hopefully hearty endeavors comes the responsibility of articulating obligations and enforceable protections. Some of our deliberations should have to do with what a number of bioethicists refer to as intergenerational justice. We must consider not only the questions of what do we owe ourselves, but also, just as importantly, what we owe the future? What are our obligations to generations yet to be born? Is it good to open the human genome itself, namely, DNA to the goal of utilitarian processing and manufacturing, where DNA and other bodily tissues are simply spare parts to be manufactured as were raw materials in the industrial revolution? Other important electronics industrial revolutions occurred outside of us, but this one is about us, about our DNA.

Are we even yet prepared to engage in informed conversations about the implications and consequences of privatizing and manufacturing our own and other peoples DNA? How is owning someone else's DNA not akin to owning their destiny, especially since all knowledge that we know of exists in human, animal, and plant DNA? How can owning someone else's destiny not take us further down the rock strewn path already made bloody and horrible by human rights depriving, eugenics based ideas and actions? Where is there a place for a "common good" and "social justice" in a society that is often preoccupied with individual prerogative and might makes right? And, lastly, what are we prepared to put into place by way of responsible governance, so that we rein in the excesses of eugenical fanaticism that in this century would take us dangerously close to a post-human existence? My time is up, thank you.

[RICHARD HAYES] Marsha, thank you so much. Susan?

[SUSAN LINDEE] I've been puzzling over the question: why is all disease genetic disease? So that's my starting point and I'm going to talk about the kinds of things that I've been thinking about. We can return to some of these issues during discussion. I can't possible deal with the historical reconstruction of how this happened in ten minutes, but I'll do my best.

Newsweek in 1994 published an article called The Gene Doctors in which there was a quote: "except for getting hit by a car, all disease is genetic disease." Now why should this so? In 1998 there were seventeen candidate genes for obesity. I started thinking a few months ago that if there are genes for obesity or that make obesity more likely then perhaps there are genes that make starvation more likely. So I asked, is starvation a genetic disease? I started looking for starvation genes on Medline and I found seven. Meaning, I found seven papers dealing with bacteria that couldn't survive in nutrient mediums missing a certain material and I found one on e-coli. But I found nothing on human starvation. Now what do you think I found on Medline when I put in "obesity gene"? I found 2.6 million papers on the "obesity gene." Is obesity a genetic disease? Is starvation a genetic disease? We're probably talking about a related metabolic process. People differ in the rates at which they metabolize nutrients and they probably differ in the rates they starve to death and they differ in the rates in which they gain weight. But obesity is a problem experienced by well-to-do consumers in developed worlds, and starvation is a problem you cannot sell a biotech solution for. You don't have an audience. You don't have anyone to buy it. You don't have any consumers.

So what questions loom large in genomic medicine? What questions seem to be important to answer? What do you need to know about the body? What do you need to answer in genomic terms and what conditions come to be understood in genetic terms and why these conditions? Such questions have guided my research. As my opening quote suggests, by 1984 in popular culture at least and to large extent in academic culture, that is in textbooks for medical students studying genetics, all disease has become genetic disease. You can find sentences like this scattered throughout this literature. I challenge you, if you can find a medical school textbook that doesn't have that sentence in it, I'll have a prize for you. It is such a powerful idea in medical education. It is a powerful idea in public discussion. One of the things I looked at with Dorothy Nelkin was the gene in popular culture. We were trying to figure out why cars have genes and magazines have genes and all sorts of things have genes. Why is it the gene so powerful and so important to so many people in popular culture? What does this explanation tell us about our culture?

Now, as you probably know, disease is not in practice any one single thing. This is not a powerful way to understand disease. Disease can be caused by a wide range of things. And indeed people can have the same disease for different reasons. They can have different diseases for the same reason. They could have diseases because of military action and toxins and viruses and pollution and emotions and all kinds of things. It is just a matter of dull basic logic: if we know that all disease is not in practice any one thing then what does it does it mean that all disease is genetic disease?

Social historians of medicine for the last forty years have been demonstrating that illnesses culturally specific have been revealing in important ways. Diseases tell us about our time. This perspective doesn't deny the biological reality of illness, the embodied truth of human suffering, or the importance or relevance of medical intervention. It does however suggest that disease is a biosocial phenomenon. That it is mediated by technologies of intervention, ways of understanding intervention, mediated by moral narratives. Think of HIV, AIDS, or lyme disease, or menopause, which is a disease in practice if not strictly in biology, or old age which has become a disease. So society makes decisions on what is going to count as a disease. So it is biosocial. Diseases have social meaning. They are marked in various ways by the culture in which they arrive. And disease is a place where culture is made manifest. I'm going to use an analogy. You know that a mutant fly or any kind of a mutant can shed light on the nature of the genome. Just as a mutant fly can illuminate the genome so disease can illuminate culture. It teaches us about our culture. In our culture genes fit the market place. They are little pieces of nature. They can be hoarded, patented, distributed, copied, stored. If I tell you that disease is caused by a bad environment it is not very easy to market that or turn that into something you can patent and make money off of. But genes fit the marketplace. They can be isolated. They can flunk physically to modern biomedicine. They work very well. They're perfectly suited to a particular configuration of healthcare delivery, private industry, global economic relations. We'll be talking about how genes are embedded in these global economic relations and also the contemporary academy and the sort of shifting nature of what it means to do research in the academy and the corporate investment that so many people in the genomic community have. So they fit beautifully. They're the right disease vectors for where we stand today. They're not the last word on what's wrong with our bodies. But they work well for the way we organize medicine, research, culture, politics, and society.

Now my actual historical research has looked at the rise of genetic disease to medical prominence and I've tracked it to a period long before the human genome project. In fact, what I'm suggesting is that the human genome project is a product of these institutional, ideological, and technological shifts that occurred between about 1955 and 1975. The crucial period was even shorter. It was about 1959, which is Lajorn Down Syndrome and 1968. In that period public health genetics became a reality because of Phenylketonuria PKU testing, which is a disease for which dietary intervention is extremely effective. Human behavioral genetics rose to a certain level of legitimacy in the academy. Cytogenetics gained legitimacy and became important to physicians in various ways. And cancer genetics: in 1961 Nolan Hungerford was the first to track specific human chromosomal change to a somatic cancer line. That is leukemic cells, that's chromosome 22 which is still called the Philadelphia chromosome because it was discovered at my home institution at the University of Pennsylvania. There's a massive shift going on from 1955 to 1975, taking place across many different institutions and with many different diseases involved. What I am suggesting in my research is that in 1966 people are already talking about the possibility of mapping the entire human genome as the key to understanding all human disease. It has a healthcare agenda. It's going to solve all our disease problems. It's going to have wonderful consequences. HTP didn't start in the 1980s. HTP has its origins much earlier, maybe move it back even to the eugenics period. It is clear there are strong continuities in this story.

A young gene therapy research subject, Jessie Gelsinger, died on Sept 17, 1999 at the University of Pennsylvania. He was a subject in a project at the Institute for Human Gene Therapy at Penn. His death was a result of his participation in the research, and had a broad impact. It led to a lawsuit against the University and against those who were involved. It derailed the career of one of the most prominent and high flying human gene therapy researchers in the field, James Wilson. He is now banned from working with human beings. I'm not sure what organization he works on now. It raised a very serious question about the role of bioethicists in contemporary biomedical research because of the important role in the decision to use an adult subject. A bioethicist at Penn, Arthur Caplan, advised Wilson about how to handle this particular research and was then subject to legal ramifications. Would bioethicists be held accountable for the advice they gave to researchers? It had an impact on NIH rules for gene therapy research. It had an impact in the scientific community in terms of what would be published, standards for what you had to say about how human subjects were enrolled and what they've been told were strengthened And it caused the FDA to immediately halt clinical trials in gene therapy at many other institutions and to investigate. It kind of… [break] afterwards an investigation of all the gene therapy trials that had been carried out.

In 1992, seven years earlier, the press release about James Wilson coming to the University of Pennsylvania to head this new institute called him the "Michael Jordan of gene therapy,"a gene therapy trail blazer, the best person in the field. Wilson's academic credentials, which were substantial, were emphasized. His humanitarian goals were presented almost with violins in the background. Completely missing from the press release was the fact that James Wilson was the founder and owner of 30% of Genovo, which was the biotech firm that had a direct interest in his gene therapy research at Penn. So you mentioned humanitarian, you mentioned academic credentials, you leave the biotech firm out of the story. I want to suggest that when you look at the public story/narrative what doesn't get said is just as important as what does. We've been thinking about the importance of transparency, of saying things, of making sure these things are said that was left out of the story. In later accounts and reconstructions of what happened it was clear that a lot was left out of the story about the Institute for Human Gene Therapy at Penn. You just don't mention.

In addition, the University stood to gain. The university was a shareholder in his research. The dean of the medical school held a patent on the viral vector. So here this is really an intense commercial enterprise taking place at an academic institution. Gelsinger's death brought attention to commercial networks and indeed had an impact here.

Now, Abby Lipman [of McGill University in Montreal] had a meeting a month ago, and pointed out that it's no longer enough for those of us who are engaged in these issues to be against things, we have to be clear what we are for. We have to figure out what can make this a productive world, a productive technical world, a productive biomedical enterprise. We have to be in favor of the kinds of practical regulations and controls that are gaining legitimacy around the world. We have to notice that regulations are important, that individuals need to be protected, that interventions need to be managed, and that there needs to be profound expansion of public accountability in these domains that have so much importance for all of us on an intimate personal level.

Genomic research is really intimate personal stuff. It's parent to child. It's physician to patient. It's parishioner to pastor. It has this intimate quality. It is about who we are, what our children are like, people care about it deeply. It has to be accountable. It has to be in this public domain.

So much of the discussion in the United States is posited on a model of free and individual choice. That is, that the way to resolve this is by the individual consumers at that intimate moment when they consult with physicians or genetic counselors or their pastor. I want to suggest that that model of individual choice shuts down public debate in a very serious way. There are many choices that have shaped where were are today. They're not choices by lone consumers but by institutions with profound stakes in genomic medicine. The choice to support the human genomic project which is more or less a subsidy of the biotech industry. Or the choice to pursue technical fixes for very complicated problems - and I think sex selection at the level of PGD is a really perfect example of that. You've got a problem which is ideas about gender, ideas about better or worse gender, and that problem will be resolved by sex selection by technical solution. There's been the choice to value dramatic interventions for rare disorders over those that are crucial to the majority of the world population. How do you allocate healthcare resources? How do you allocate scientific resources? And the choice to emphasize the genetic causes of all diseases partly because genes fit the marketplace and there's no way to sell something that doesn't do that. So we have a commercial enterprise that needs to be more accountable, more transparent, more open. I think that is part of what Sheldon is going to talk about. And so now I'll turn it over to Sheldon.

[SHELDON KRIMSKY] About 29 years ago a group of scientists got together when they realized that they just discovered something that was quite revolutionary. Namely, how to move genes around from one biological system to another. They were concerned that by using these new biological techniques they could create organisms that might pose a danger to those in their lab as well as others in society. Those concerns still exist in some form today. But in their effort to address the immediate laboratory risks, the scientists kept out all the other issues that might be a concern to society like all the possible misuses of genetics in the future. They resolved the problems they had amongst themselves about how to regulate research with the new genetic technology called recombinant DNA molecule research. Within a few years after that those meetings took place, 29 years ago, these same scientists realized that there was a lot of money to be made in this new area. And they began starting new firms and developing university connections with companies. In the 1980s, we saw the beginning of the new biotech industry. That came at a time when scientists themselves began to realize that it's not such a good idea to raise these issues in a public forum because the last time they discussed the issue publicly it got a very strong reaction. The citizenry wanted to be involved in these discussions. We begin to see a very different attitude amongst scientists about discussing the social and ethical implications of genetics. Many of them were now equity holders in companies and became multimillionaires practically overnight.

A lot of new products were going to be available, mostly agricultural products, and a new generation of pharmaceuticals. The pharmaceutical industry was just bursting with enthusiasm because you could make all kinds of new drugs for all kinds of new therapeutic uses. Now in case you haven't noticed, around the time that the biotechnology industry began, the attitude of government was that you regulate very very little. Regulation was out of phase with the new political agenda of downsizing government.. We entered a mode of individual choice and consumer sovereignty emblematic of the Reagan years. So whatever is produced, let consumers decide based on the information that they get. And you also notice that the pharmaceutical industry was marketing directly to you, on television. So you have a very aggressive pharmaceutical industry with a lot more opportunity to create more products. Increasingly, with the Human Genome Project science was beginning to find various genetic markers for all sorts of things. There's a whole range of scientific articles which have made claims for identifying longevity genes, cancer susceptibility genes including skin, breast, colon, and prostate, genetic markers for Alzheimer, genes for obesity for burning up fat, for retina degeneration, for deftness, food choices: allergenicity, even genes for bed wetting, it goes on and on. There's about 4000 hereditary diseases that are already identified with some sort of genetic defect. Some of these are spurious and some are not. What does this mean? One of the things it means is that there's going to be a lot of pressure for genetic screening. You know, parents who want to have a perfect child, for example, are vulnerable to these claims. With potentially thousands of markers, how are you going to determine what to screen for? Yet this is going to be marketed to people. There's no regulation about screening. The FDA does not regulate these screens. They're marketed directly to prospective parents, pregnant women especially.

The other problem we're going to face is the problem of health care and health insurance. For example, if all disease is genetic then every one of our diseases is a preexisting condition. The inherited genetic defects are the preeminent preexisting condition. You know what that means in getting health insurance. Every disease is genetic then we're all walking around with preexisting conditions for everything and therefore a real problem with discrimination in obtaining health insurance and life insurance. The current tendency of the government is to let the market play it out. I believe we have to decide as a society what we want the market to determine and when we want social policy to play a role. If we have a fundamental right to be protected from discrimination how is that right going to be protected. This is a very serious and real problem because we're already finding areas of discrimination. If you apply for health care and you put down that your parents had some sort of genetic disease then you're already a target for discrimination and we've already seen examples of it. That's why all citizens have to get involved in this discussion. You all have to figure out whether or not we should just let the market system operate, whether or not the pressure that's put on future parents is going to continue unregulated, or whether or not we have some kind of rational system for deciding which of these technologies will be used, who will use them and who will benefit from them.

You have to understand that the pharmaceutical industry is benefiting significantly from all of this. It is a vertically integrated industry. They fund most of the research, control most of the data, market directly to you, pay for most of the journals because they pay for most of the advertising, they educate most of the physicians after they get their degrees by funding continuing medical education, so they control the information that gets to physicians, and this goes on and on. There's good reason why the pharmaceutical industry doesn't want to release certain kinds of data. There's a good reason why when they advertise on TV they're not advertising antibiotics because, you know, you're not going to your physician and say "give me some antibiotics" when you're perfectly healthy. They're advertising for things like allergies, or to make you more sexually active, etc. This is going to go on and on and make us quite insecure that we're not quite perfect. So we have to ask a lot of questions as a society. Do we have a stake as a society in the aggregate decisions of individuals who are going to be making these choices about selecting assays. What happens when you get your little disk with your genome on it? And the doctor says, "well this will be terrific because we'll have your little genome disk and we'll be able to figure out whether or not these drugs you're taking will have an adverse affect on you." It sounds like a good idea. Who wouldn't want to know to what drugs they will have an adverse reaction. But when has the pharmaceutical industry been interested in adverse affects of drugs. The answer is never. They do very little investigation in the adverse affects of drugs, so the idea that you're going to have this little chip with your genetic markers on it and that is going to save you from all the adverse drug affects is absurd. What it's going to do is it's going to help the health care industry to determine what your rates should be. And that's the thing we have to be very vigilant about, namely, the discrimination that will arise from this information getting out to the various insurance companies, which have an interest in adjusting their rates for people who have these genetic markers. Let me turn it back to you, Richard.

[RICHARD HAYES] Thank you Sheldon. I'm going to say a few words about politics, policies, and what we can do. The new technologies of human genetic modifications are among the two or three most profoundly critical technologies of the 21st century. If these technologies are developed and used in the prevailing contexts of free market competition and individualistic social values, they threaten to greatly exacerbate existing inequalities of health and social power and existing modes of discrimination. In addition, certain applications of these technologies could open the door to a new high-tech eugenics that could undermine the foundation of a democratic society.

Now, we don't want to simplistically say we're against biotechnology. That's a non-starter. That's like saying we're against yogurt and penicillin. Instead of thinking in absolutes, we need to summon our collective wisdom and will to devise a nuanced set of policies that have the potential to command majoritarian support. Some human technologies will likely be judged to be unproblematically beneficial and should in fact not only be accepted but supported. Others pose both benefits and risks, and we don't want to ban them, but we want to proceed carefully and make sure they are regulated. And some, hopefully few, may be judged to pose such special risks or to be so clearly unacceptable, that they will in fact need to be proscribed.

If we are to be sure that the development of the new human biotechnologies supports rather then subverts social justice, equality, and democracy I believe we need to affirm at least three principles. First, that benign and beneficent technologies must be made available to all. Second, that the precautionary principle should be applied when assessing new human biotechnologies. And third, that final decisions over the development and use of these technologies should be made by democratically accountable institutions.

Skeptics might hold these proposals to be utopian, but that view is refuted by an existing proof. That proof is Canada. Canada has a national health program that ensures access, among other things, to prenatal and other genetic services that have been approved for use and are regulated. Landmark federal legislation passed earlier this year requires private firms and research institutions engaged in any activities involving human gametes or embryos to obtain a license ensuring that they operate in accordance with approved policy. The law gives the green light to embryonic stem cell research, but imposes strict controls including incredible monitoring. The law further establishes a federal oversight agency appointed by the cabinet to review and approve the proposals for controversial new genetic technologies. It is important to note also that this law was developed in close collaboration with the pro-choice community in Canada, and the pro-choice community was active in lobbying for its passage. Similar policies do exist in many countries - in Europe, Australia, and elsewhere. Utopianism or fatalism is no excuse for complacency in getting underway with the kind of work that needs to be done.

Nonetheless, the task is not going to be easy at all. These technologies are being developed at an extraordinary pace. The appeal of the mantra of inevitability will need to be overcome. A new bioethics discourse grounded in social responsibility rather then individualist utilitarianism will need to be fostered. Certain policies, such as bans on reproductive cloning, will need to be universal if they are to be meaningful at all. So these are no small challenges.

One especially key challenge, which I want to focus on, is posed by the fact that opinions and intuitive reactions concerning these new technologies don't fall easily along the conventional left-right ideological continuum. Religious conservatives were the first to become vocal on high profile issues such as human cloning, and the press quickly framed subsequent debate over new human genetic technologies using the conventional categories of abortion politics. But this is misleading. We can be deeply committed to a woman's right to abortion and still oppose the genetic reconfiguration of the human species. Many pro-choice leaders also raised concerns about the commodification of reproduction and human relationships. Disability rights leaders charge that a society obsessed with genetic perfectionism could come to regard the disabled as mistakes that should have been prevented. Civil rights and human rights leaders are wary of eugenic technologies and ideologies that could stoke the fires of racial and ethnic hatred. Many environmentalists see human genetic modification as another potentially dangerous technology being approved long before the long term consequences have been considered. In 2001 the People's Health Assembly, representing hundreds of international health, development, human rights, indigenous rights, and other organizations issued a major declaration opposing the push by the global biotechnology industry to place human genomics at the privileged center of the global public health agenda.

It is true however, and especially in the US, that the most well organized constituencies active on human genetic issues are in fact the biotech interests on the one hand and the religious conservatives on the other. In that sense, the polarized framing adopted by the press is accurate. The terrible consequence of this is that if these two polarized constituencies or points of view remain the only choices available then liberal and progressive voices, when compelled to enter the policy arena, if forced to choose between the two, are going to go with the biotechnology industry. **And in that [break] history and to the deepest values of social justice, equality, and democracy, so it is imperative that third voice enter the fate. This is a voice that isn't necessarily opposed to all human genetic technologies, nor necessarily opposed to human embryo research in any absolutist sense, but is very concerned about the social, economic and political implications of these technologies and would certainly not want to trust genetic future of the human species to research scientists and biotechnology companies.

So what is to be done? We need new initiatives within existing liberal and progressive organizations and we need new organizations to take these issues and put them on the public agenda in a new and compelling way. We need visionaries in the philanthropic community to support such efforts. Domestically and internationally we need new levels awareness, commitment, and engagement - in short, a new social movement - to ensure that the new human biotechnologies support rather then subvert deeply held commitments to equality, democracy and social justice. The hour is late. There's no greater challenge. Thank you.

[RICHARD HAYES] So with that we conclude our panel presentations. Let's open it up. Let's go around and get seven or eight questions or comments that you'd like to put on the table and we'll then see who'll answer them. After that we'll go around again.

[QUESTION] My name is Dan Sharp and I need to say my affiliation because I think the organization we're creating is designed to answer your requirement for a new organization to put this issue on the global scene. The organization I'm creating is called the Royal Institution World Science Assembly. It's founding assumption is that there needs to be brought into the discussion the fact that there is a failure of effective communication, understanding and trust between the world of science and the world of policy. Now you did not speak so much about the government side of this, but underlying all the presentations there seemed to be the assumption that government regulation is required to protect public interest. So the question that I'd like you to address is: What is the current state of the dialogue between the world of science and policy makers? Is there effective communication? Is there understanding? Is there trust? And if not, and our founding assumption is that there is a major bridge needing to be built, what steps are now being taken or what would you suggest, to do in our process of trying to convene a kind of Davos for science and policy. We need those kinds of people at the global level precisely to address what sort of global regulation is required in the biotech area.

[QUESTION] My concern while listening there was a general thread to what was said was: we talked about commercialism creeping into the educational system. The reality is that most of the research that takes place at colleges would not take place without commercial interest to pay for it. Colleges themselves don't have the money necessary, nor the fund raising capability to do this primarily profit driven opportunity. If you control that, you will drive them to hire the researchers out of the universities, rather then leave the researchers in it. And they have money with which to do that. How do you propose to both control that as well as keep the people where they're supposed to be? And secondly, and more fundamentally on the insurance piece, which I thought was a very good example when we talked about life insurance and health condition, right now the life insurance industry is extraordinarily judgmental in its decision making relative to one very important thing-which is age. They sell life insurance very cheap to people who are young because they've determined factually that they're going to live longer and they charge a lot of money for insurance to old people because they've factually decided that they're not going to live that much longer. Frankly, that disk provides the same information. What you're suggesting by trying to eliminate or control that is the idea that the insurance companies should subsidize bad health with good health, which means people with good health no longer buy insurance. And the insurance model that we use in this country doesn't work. So though the idea is correct in that it is prejudicial, there is a solution from the private sector that's premised on the idea of making a profit that is controlled primarily by stake holders. How would you respond to that?

[QUESTION] My name is Cassandra Rita. One of the themes you seem to be talking about is the theme of democracy and having things be in the public sphere. And speaking on the national level rather then the global level. I think many people agree we're having fundamental problems with our democracy now, whether it be disaffection or constitutional crisis of the last presidential election. In that context what kind of processes can be introduced to deal with this specific problem. I believe, and this is just a rumor, I haven't seen it actually documented, that in the nanotechnology appropriations bill there was either a requirement or at least some funding for citizen panels to look at how that money should be spent. And I wanted to know what you think of citizen panels to bring in not just policy makers and scientists, but also your average type Americans into the discussion.

[QUESTION] My name is Walter Terrace. My question relates to the new eugenics and its dangers. To get specific, what is known so far about the genetics of intelligence? And who or what has been most closely involved these days in pursuing this and perhaps developing or marketing anything that has the potential to alter the quality of intelligence.

QUESTION] Laura Estly, vice president of Family Planning Advocates of New York State based in Albany. We're a reproductive rights and justice organization. My question is how we can raise these important and legitimate issues you've discussed this morning without inadvertently lending support to the religious right agenda which is increasingly to grant personhood status to not only the fetus but also to the embryo and the pre-embryo and the zygote and the two cell organism at the expense of women. Our organization is quite concerned about the issues you've raised, but we're not sure how to deal without stepping up next to the very people who would deny women's reproductive rights.

[QUESTION] I'm a freelance science writer. It appears to be true that gene science is broadening and diffusing from the idea that one gene causing one problem to the idea that genes work in coordination with one another and the process is very complex and the number proteins that get produced far exceeds the number of genes. This kind of complication will probably serve us from the simple commercialization of genes. I was surprised to hear that Sheldon didn't mention it. I was wondering if he was aware of that trend?

[QUESTION] Dennis and Joyce. I'm wondering if there's not at all a possibility of an opportunity in the tension between the far right and corporate America. The sort of neocon alignment. Is this issue problematic enough to fracture the religious right's cooperation with corporate America?

[SHELDON KRIMSKY] First you mention that without private sector funding the universities couldn't or wouldn't be able to do their research. Number one, nobody has said there shouldn't be private funding in the universities, but the fact is only 7% of the universities R&D budget comes from the private sector. So it's a relatively small percentage of the budged of universities. You have to remember one thing; something happened in 1980 that was quite extraordinary. The government basically said in 1980 that if we fund your project at a university and you discover something we're going to give up all the intellectual property rights to you and your business partner. This is a way of saying that the public puts its funding into research and if anything positive comes out of funding that discovery it can be patented and appropriated by private interests. This is a very interesting kind of welfare system. It's a perverse way that the capitalist system is supposed to operate. In capitalism, if I'm a private investor I either win or I lose. When the public invests, it either wins or loses. But in this case, the public makes the investment in science and if the investment succeeds, then the money goes to the private interest and we pay double for the drugs that are produced. We paid up front at the research end, and then because everything is patented three or four times we have to pay multiply more for all the patented interests that come out of the drugs. So that's the reality of what's happening in that system. The other thing to understand is that government scientists earning, say $150,000 a year are allowed to form partnerships with a private company. The Los Angeles Times ran a series of investigative reports about this scandalous situation. Why is it that our government employees who work 40 hours a week are able to work, say half of their 40 hours partnering with a business interest that has an interest in the projects that their doing in the laboratories they run. Since when has the government become a welfare program for private sector bioscience? The whole thing is quite scandalous. So that's what we're dealing with here in terms of corporatization of biotechnology.

[QUESTION] Should the government not fund research?

[SHELDON KRIMSKY] That's ridiculous because the private sector would only fund the research that would lead to a specific product. We wouldn't get any of the fundamental research that we need from government. So I'll stop there.

[QUESTION] (Inaudible). They want to prove that sugar is not bad for you. Sugar is a metabolizer. It's in every cereal. As long as a university stands by that sugar is not a bad source of energy, then the sugar industry is made.

[QUESTION] Private science is about commercialization, no question. It is about developing something that can be commercialized and sold. No question. If government science is not about commercialization then it makes no difference what happens to that research; if it is about commercialization then they, and the people who develop the commercializable idea, and in this case the people of the United States, should profit from it.

[RICHARD HAYES] That's what he [Sheldon] said.

[QUESTION] And I'm not disagreeing with that. But let's not muddy the water. If the government doesn't want to hold onto the commercialization activity then they shouldn't promote commercialization activity.

[QUESTION] I agree with you.

[RICHARD HAYES] Marsha, do you want to comment on any of the other questions?

[MARSHA DARLING] There were so many interesting questions raised. Someone raised a question on government regulation, public interest, and how do those engaged in regulating this industry learn about it and gain information about it. And I think that's part of what we're struggling with. How do you make sure that legislatures when they have to make a decision about a genetic technology or a biotechnology have a source of information that is reasonably legible and complete with a disillusion of the Office of Technology Assessment. Which really all those old OTA reports are still so good. You can still read them and learn things. They were wonderful reports. OTA doesn't exist anymore. I had a student who was working on why the OTA disappeared, and she talked to several legislators and asked them how they make decisions when confronted with a complicated biotechnology and they said "they talk to their cousin." It was mind blowing. So how do we make sure that when people have to make decisions about bills that they at least have the beginnings of a comprehension of what the issues are.

[SUSAN LINDEE] Someone raised the question on insurance companies and genetic discrimination. Isn't it that to date we have the sense that we spread the risk, when we bring a large number of people into insurance, that we know that there are going to be some people in very good health, there are going to be others with health needs. And isn't it that the industry to date has operated so that across the board while there are clearly differences in rate bearing, that we in principle think of insurance as something whereby - as a group, as Americans - we spread the risk to all other people relative to insurance coverage. So the real question becomes one of whether or not in changing the implicit compassion that is integral to that view of spreading the risk, whether or not we want to commit ourselves to such a narrow focus. This is really about ethical boundaries. And how do we want to define under what circumstances we'll say yes to discrimination and under what circumstances will we say no. It seems to me specifically in response to the whole question of how the insurance industry operates, and Shelly mentioned this earlier, that we already fundamentally spread the risk of insurance protection and insurance cost. We are seeing those sets of dynamics shift with genetic discrimination.

[QUESTION] I'd also like to hear some discussion and answers to how we make sense of the problem of the far right antiabortion movement, their investment in the limitation of these technologies and other investments which may be very different. How do we do it? We were at a meeting that discussed that issue a few weeks ago and its very difficult and complicated and its important to address it directly. I don't think its something we can push under the rug. We must be forthright. Say yes, we are concerned about these issues, but our reasons are different. I think sex selection, which is happening now, is a huge issue. We should be paying attention. I think Marsha suggested we look at it, we come at it from a different direction. It's about women's rights.

[MARSHA DARLING] Also the clock is running on sex selection PGD. Let's say that at any given time we know that the access to these technologies is fairly expensive, but let's say tomorrow afternoon we have a very poor woman who was denied access to sex selection PGD. She could conceivably bring a guarantee, a 14th amendment guarantee, of equal protection litigation in court. And she could conceivably win. So do we want to wait until we have a set of circumstances, court decisions, a direction in which technologies are openly discriminatory, in this case against female fetuses. Do we want to wait and then concern ourselves with what appear to be repressive policies? And regressive legislation? Wouldn't it be much better and much more consistent with how we frame issues - the precautionary principles and do no harm - to engage this issue before it moves through the courts and before there's a constitutional space carved out that gives someone who chooses to pursue it the right to insist that access to sex selection PGD is their constitutional right?

[QUESTION] What if someone brings a suit on behalf of the fetus? Then you've got reversed Roe. If we wait for a court, they may not understand technology but may understand the 14th amendment and see that you're picking one sex over another and say they're pretty sure that's discrimination. You open a can of worms that may never be closed, that may fundamentally change the way these technologies are used in the United States. So I don't have an answer.

[SHELDON KRIMSKY] I want to get back to the comment by the science writer. You raise a point about the fact that the mechanism of genes is slightly more complex than they were first thought to be. I think this is a really important comment because there's really two models of the genomes that's been put out. There's the Lego model, which says if you take a gene from one system and put it into a new system it'll either do what it did before or do nothing else. And that's clearly not correct. The other view is the Ecosystem Model of the genome which says gene-gene interactions occur. I think that the FDA understands this, but yet they regulate or don't regulate on the basis of this simplistic (Lego) model. When you put a gene into a system (food plant) what you get depends upon where it goes in the system, where it's placed in the chromosome. And you can't predict where it's placed. It's a shotgun affect. Also genes react with other genes. They can down regulate (produce less of a protein) or up regulate (produce more of a protein) . So there are all kinds of things that can happen. We know this because we've tried it in plants and we've found out that when we put the foreign genes in the plants it can change the constituents in the plants. But we're in such a non-regulatory state of affairs that we've decided, for example, not regulate genetically modified foods. The only thing we seem to regulate is drugs and you're absolutely right. It's a much more complicated system then we first imagined.

[SUSAN LINDEE] But you know the implication of the comment is that once you understand how complicated genes are you get around the question of power and institutional control through knowledge. I want to contest. I think you're absolutely right, Shelly - in practice, if you look at how genes work they're extremely complicated. But those data do not necessarily mean that courts won't use genetics as an explanation for things, that employers or insurance companies won't use genetics as a way to exclude people or a way to control people. So it's not in practice, you have several levels at which the gene is understood as it plays out in the world. The technical stuff may not be the savior that gets us out of this mess no matter what the genomics find because the mess is here for a lot of different reasons.

[MARSHA DARLING] In respond to your concern of strengthening democratic involvement. On a number of occasions in recent months I've been part of discussions where we've talked about the real need for this. First the real problem of the civil society deficit, and just this morning I've been part of discussions where people acknowledge that the philanthropic community needs to be more involved. At every meeting or call or when we co-convene, we try to make sure we invite program officers who are interested primarily because resources are needed to engage in better public education, in building a civil society, organization forums, and sponsoring the kinds of public places where there can be increased discourse and sharing and exchange. And not just amongst older adults. I'm very concerned about the population between 16 and 20 because in the next ten years they're going to be asked to underwrite as American taxpayers the cost of much of this as young adults. So I'm very concerned about what is being taught in science curriculum in high schools and things like that.

[RICHARD HAYES] In a moment we'll do another round of hands and we'll respond the same way. I want to respond to the points raised about building trust with scientists, and about driving a wedge between the social conservatives and the corporate community. Is there a chance these issues will help sever that connection? There is, but again its subtle and difficult. There's probably not much that makes sense to talk about before the election, but in looking at the long term there have been some folks in the pro-life community who are very concerned about eugenics - not because of their belief in the personhood of embryos but simply because they are opposed to eugenics - they say they'd argue that the pro-life community should put abortion on the back burner in order to build coalitions against eugenics. If a scenario like that was real then that is something worth talking about. Before we do another round of questions and discussion, let me mention one thing. Marsha referred to discussions this morning about meeting early in the fall to continue this sort of exchange. Any one who may be especially interested in that be sure to get in touch with Claire Chapman, who is helping coordinate. OK, let's do another round of questions.

[QUESTION] My name is Peter MacNeilly and this topic is somewhat new to me so I'd like to thank you all for your presentations. In listening to you all today I am curious if within the discourse of biotech is there any literature about biotech from a national security standpoint? What are the perceived threats and does anyone foresee a time when such a concern drives the community in something of a biotech race towards ends that are not conducive to democratic thought at all but are based on a perception of survival similar to an arms race we went through not to long ago?

[QUESTION] What we're hearing here is about much broader issues, where people say that "government isn't a part of solution, the government is the problem," the mantra that Ronald Reagan used. And there are many institutions and individuals that share concern about this. What I want to ask is if you can connect across that spectrum

[QUESTION] I've been an activist for a long time but I'd also happen to currently be one of those guys doing research on the genome a few blocks away at a prominent research institution. One of the things of concern to me is that if a broad based movement is going to be created to oppose some technology that are not conducive to human well being, then you gotta get scientists with you, or at least there's some advantages to getting scientists on your side. A lot of the comments made here imply a lot of things about your opinions and what you think people should think about science. I would like you to explicitly state what you think people should think about science and scientists so as to put it onto the table and then maybe we can decide whether or not that'll help scientists get on board or not.

[QUESTION] I'd like to make some comments. I think professor Krimsky ignored the point taken by the science writer that human biology, the human genome, has a lot of redundancy. It's possible that all these changes we're doing will have beneficial effects. Secondly, who is going to be qualified to make these decisions? At least 90% of Americans, for whatever reason, don't accept the theory of evolution, which is a fundamental problem.

[QUESTION] Bascom Guffin from New York 2050. In the interest of being for something, I wonder if one way you can deal with things such as discrimination structurally, and one way to deal with medical discrimination is to be for and fight for universal health care?

[QUESTION] Concerning the unforeseen results of insertion of genes, is that considered? And a second question to Marsha Darling, what is the website you were referring to for your paper?

[SUSAN LINDEE] We wouldn't be so interested and concerned about these issues if we didn't recognize the tremendous potential for biomedical science to alleviate human suffering. The reason we care about this discourse is because science and technology have been so important to progress in many different domains, on many different levels to helping so many people. So it matters. That's why it's so important. It wouldn't be so important if it didn't have such potential to make such a huge positive difference in people's lives.

[SHELDON KRIMSKY] I've been watching biotech grow since 1976. The most important contribution that biotechnology has made in all those years has been the release of prisoners who have been sent to prison, including death row, who were proven innocent by DNA evidence. Nothing seems to come close to that as a social contribution of biotechnology. While that is a positive contribution of biotechnology, unfortunately it is not a fundamental right for prisoners to have access to DNA tests. There are some very positive contributions of biotechnology but in my mind nothing comes close to that.

[MARSHA DARLING] Someone raised the national security issue. You might want to look up the Sunshine Project at the Berlin Conference we were part of. The guy who runs the Sunshine Project gave a fabulous presentation. They've been tracking bio-weapons development in many different countries. Some of them with chemical agents like ricin. If you send me an email I'll send you his name.

[QUESTION] I don't know if you've followed the case of Thomas Butler, the microbiologist in Texas who was arrested. For microbiologists and the biology community, bio-terrorism, the Patriot Act, the law you [Shelly] were referring to about BIO-terrorism and the domestic production of bio-terror agents, there's the international biological convention and then there's the US rules on not making BIO-terrorism agents. This is a really important question that has had an impact on biology.

[RICHARD HAYES] Let me just comment on the question about scientists. I second Susan's comment that scientists are part of the enlightenment tradition and that there's no reason why science shouldn't be used to better the human condition. I've been saddened to see, regarding the human genetic technology issues, how silent the science community has been in contrast with the role they played after Hiroshima. It was the nuclear scientists who took the lead in calling for bans of nuclear weapons and weapons testing. You don't see that coming out of the molecular biologists around some of the real dangers posed by new technologies of genetic modification. The scientists who are motivated to play that role have a world-historical role to play. We need scientists who recognize that humanity as a whole should make the final call on controversial, risky technologies. I know there are several scientists here who I'd like to invite to get together and talk and find out how we can get leadership out of the scientific community.

[MARSHA DARLING] The website for the conference that Susan and I were referring to was www.gjga.org and there are lots and lots of papers.

[RICHARD HAYES] All right, that's it for today. Thank you so much for your participation. And be sure to get in touch with any of us if you want to continue this discussion, or otherwise become engaged.