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TABLE 1
Facilitator: Julie Harris
Notetaker: Jesse Reynolds
Speaker 1: Think about the need to work the discourse at the public level, and how that shapes our normative discussion. Who does that leave out?
Speaker 2: My daughter works with refugees in Africa. What would "Mama Tembo" say about the issues? Technology can be a form of theft of resources. Speaker 3: The rhetoric is similar to what I hear around juvenile justice and environmental racism issues. Immigrant communities should be engaged. Speaker 4: My biggest issue is what Stuart raised [in the plenary]: the normalization of geneticization of society. Concerns about 23andMe obscure the fact that the information itself may be harmful, since the concerns assume that we need that information. It is not who is doing the testing , it is what we are getting out of it. Speaker 5: I am thinking of concentrations of power, thinking of the dichotomy of social race and genetic race. How does that distinction impact public trust? Speaker 6: I see technology and policies (on reproduction) as potentially coercive. Where is the decision-making, and how can we avoid compromises of women's dignity and autonomy? How can we frame our approach in a manner that does not scare reproductive rights advocates? Speaker 7: Technology in a way can have a life of its own. Stuart may have been right: It has taken hold. We didn't have Facebook and 23andMe 5 years ago. Now it is so natural, we are cyborgs. These technologies are sexy stuff, and appealing to the developing world. But at the same time, the problems we face are our own problems, ones of privilege. Speaker 1: What I am hearing is that the conventional (US, or Western, or developed) view is that technology is great, and this is pervasive. How can we talk about pulling something back? Speaker 4: Roads are a form of technology, and are moving into areas that did not have them. It is the elites of the world who are implementing the vision, including the roads. There are advantages and disadvantages. Roads, biotech, etc. are changing the lives of those who get them dramatically. Speaker 5: The challenge is, Where do we devote our resources? It is one thing to develop the technologies or not, and another to use them skillfully. Are the high-tech solutions necessary? Speaker 6: But that is not either/or. There is also the decision about when/how to help individuals as opposed to addressing the problems. Also, let's not get stuck in the notion that technological developments are inherently bad. Think about climate change: Now the developed world is raising concerns? Speaker 2: The Amish decide about what technologies to adopt. Not all communities decide in the same way. Speaker 8: The question concerns deciding how it will affect the community in conditions of uncertainty. Speaker 2: Go back and read The Abolition of Man (despite the male language). Power over Nature is really power over other people. Another example of a big transition: Big Pharma is now doubting the competition model, and talking about sharing data among them. Speaker 3: Collaborative versus competitive model. How do we talk about collective harm? Democracy does not do a good job of addressing this. This is particularly tough with respect to technology. Isn't the horse out of the barn? Speaker 4: I think we can rein it back in. For example, the New York Times reported that many people die in the United States due to lack of air conditioning. So my glimmer of hope is: How do you have the conversation in a manner that says, let's not necessarily get rid of this or that, but how can we better allocate our resources? Speaker 2: Sometimes binding standards are needed; for example, the appliance efficiency act. Speaker 3: How did this come about? Speaker 2: The enviro groups raised the cost. How do we raise the cost? Speaker 8: So do we need to speak the language of profit-value? Speaker 3: So it can be a question of ideology, of assumptions. What are the givens? Are they actually given? How can we critique them? For example, the Left in the U.S. ends up in the frames set by the Right. Speaker 7: And this stuff, our issues, are framed as Medicine. How can we touch that? Speaker 8: Medicine in general has that great sound, framing; but everyone can tell a nightmare story.
TABLE 2
Facilitator: Colin O'Neil
Notetaker: Matt Lamkin
Speaker 1: When we raise our concerns about emerging technologies, we can end up sounding like pro-lifers.
Speaker 2: We talk in shorthand and soundbites and fall into "camps" — pro-life, pro-choice, etc. — when the issues and our opinions are much more nuanced. How can we create space to talk beyond soundbites? Speaker 3: So should we draw sharp battle lines, or try to find common ground and work with social conservatives to advance policy goals? Speaker 1: We have to be careful to avoid allowing short-term tactical alliances to strengthen groups with whom we mostly don't agree. Speaker 3: We had success with the latter approach in opposing California Prop. 71 (California Stem Cell Research and Cures Act). Although the effort failed, we worked effectively with conservatives without strengthening their underlying agenda. In fact, they opposed the proposition without talking about the sanctity of life. Speaker 4: Contrary example: In the UK there arise questions regarding whether to build on protected lands. The environmentalists oppose this, as does the British Nationalist Party (BNP) — i.e., the racists. Environmentalists have teamed up with the BNP on these issues, which strengthens and lends credibility to the BNP, and also sends the message that the environmentalists care only about their issue, and not about racism. Speaker 5: We talk about blue states and red states, left and right, but people are much more nuanced than that. "Conservatives" include some racists, as well as others who care deeply about people and communities. Liberals are also a mixed group. We need to move beyond short-term tactical considerations to find principled commonalities. Speaker 2: We also need to avoid talking amongst ourselves. We need to expand the conversation. Speaker 6: The U.S. public is willing to do just about anything that promises health benefits, but they're very uncomfortable with the idea of enhancements. We need to demonstrate to the public that we favor the health benefits of new technologies, but also feel the need to move cautiously. There's a common misconception that the path from scientific discovery to social benefits is clear and smooth. Speaker 3: People assume that whatever benefits are promised through science will actually be realized — it's a new public religion. Speaker 5: If you look at meta-analyses of public opinion polls on these issues, you find that small changes in phrasing make huge differences. If you ask in one way, 90% of people say they support a technological application. Asked a different way, 90% oppose. Speaker 6: We've held a series of Danish Consensus Conferences (a deliberative process) on the topic of nanotech for human enhancement purposes. We've consistently found that after deliberation participants were much less interested in technologies that can be used as enhancements. Speaker 5: But technology advocates undermine that kind of discomfort by chipping away at the gray areas. We can't let the existence of gray areas paralyze us. Speaker 6: Why do we so often look to technological fixes for our problems? Speaker 3: Part of the reason is because scientists with conflicts of interest hawk those fixes. Speaker 6: The academic culture of "patent or perish" has exacerbated this problem.
TABLE 3
Facilitator: Jenn Rogers
Notetaker: Molly Maguire
Speaker 1: We are taught that as humans, we are our genes: This is a radical departure from what it means to be human. There are human implications in how we treat one another or how we will treat one another — a possibility of dehumanization. Speaker 2: Liberal credulity implies white supremacy. Technology is merely a new weapon in an old paradigm. Nothing needs a technological fix, only social fixes are needed. Speaker 3: There is a rhetoric of "newness" but the extension of control that new technologies bring affects old problems. Speaker 2: That kind of rhetoric contaminates the Left. How does the legacy of eugenics affect us? Speaker 4: How is race biologized and how is biology racialized? We need to describe the intertwining of these ideologies and articulate what the stakes are for genomics. Speaker 3: Neo-liberalism is no longer unchallengeable. Biotech can be seen as exacerbating international colonialism. Speaker 5: Biotech is here, the question is how will we use it. In Africa there is a complete lack of information about biotech. Speaker 2: There is tension between the academic and activist approaches. An underlying risk is the constant privileging of DNA — we are coming to live in a society where it is taught that personhood is the same as DNA. Speaker 6: My company and website caters to those who seek out half their parentage. Speaker 7: The wish to know one's parents or siblings doesn't map perfectly onto a wish to know your DNA. Speaker 4: The UC Berkeley program [to analyze the DNA of freshmen] would be enhanced by expanding it to include forensics, agriculture, etc. Speaker 3: The reduction of the self to the physical body diminishes the individual's power and personality. Statistical patterns diminish and group people by their characteristics. How do we develop a counter-narrative to DNA idolatry? Speaker 2: Human rights discourse is the most powerful framework/argument but does it offer us more than a legal regime? Speaker 3: Picking up on Dorothy Roberts' point [in the plenary], there should be an alignment with environmentalists to sustain complexity and oppose ecological reductionism. Speaker 5: In the nature vs. nurture debate, nature seems to be winning. Speaker 1: How should we understand the 'gay' gene? The notion is accepted by gay rights activists because it fits with the argument that homosexuality is natural or inborn.
TABLE 4
Facilitator: Ruqaiijah Yearby
Notetaker: Jillian Theil
Speaker 1: The discussion of race and genomics was convincing. The industrial market undercuts opposition against technology.
Speaker 2: I would like to pinpoint our location in culture, and why we think there are problems with this. We need to tap into the culture. Speaker 3: We need to think about why we find this challenging. Is it merely the path we are taking? Students need to learn history. Speaker 4: Where is the critique going to be heard? We should engage in a project to mobilize other avenues where a critique can be heard, besides professors. We need to find soundbites. This is hard to do, though, because of the nuances. Speaker 5: Issues are being paired in a gray area, and I think we need to sharpen the concerns. Speaker 6: I am interested in understanding why, although the U.S. is a melting pot for race, there is still such a concern about race. I would also like to think more on genome privacy issues. Speaker 7: Eastern European countries have egg harvesting. Research is the equalizer of exploitation when genetic information is profitable. Profit limits access to information to protect/give voice to those exploited. Speaker 2: Egg donors are not getting good counseling. Speaker 4: I know women that have gotten very sick from the process of egg donation. Therefore, these women are not in a good position to organize. There is also no medical follow-up for these women. Issues of conflict of interest should be of concern. Speaker 6: There should be a multi-level approach for people to get to understand genomics better. For example, I am interested in a version of the Pew Forum for education in genetics. Are we at a place to have regulation/education of these issues? We need to know of a culturally ready position. Speaker 5: There are indeed cultural issues with regards to regulation. I am interesting to see how genetic determinism has become so ingrained in our culture. Race is the red herring in the genome project that is a reductionist principle. Speaker 1: We need to get a message out. But we need to think about what message we are countering: Is it that humanity is a function of genes? We also need to think about the fact that we too often have to respond to catastrophes, but we are not ready to be ready ahead of time for them. (At this point, I stopped notating speakers)
TABLE 5
Facilitator: Shobita Parthasarathy
Notetaker: Judy Norsigian
After introductions and some discussion of what different world views are out there:
Speaker 1: Sometimes people claim to be improving/reshaping something, but really they are reinforcing the status quo. Speaker 2: Worldviews are deeply rooted and likely to shape the ways we respond to genetics. Speaker 3: Worldviews do actually change and maybe genetics has a potential to influence such change. Speaker 4: I see us sliding toward changing our norms now. Speaker 3: A lot of technologies seem unacceptable when they are not available or feasible, then a cultural shift occurs as the technologies become more possible. Speaker 5: So many things can be called 'worldviews.' We need to define what we are referring to. Speaker 2: Not limited to genetics, but there is a shifting worldview in that we have more of an ideological intolerance for indeterminacy (especially with reproduction). When you talk with the bench geneticists, many of them say "we don't know what will happen." Speaker 6: When we talk about biotech challenging worldviews, we have to acknowledge how it happens in very different ways in different countries. There are lessons to be learned from other policy environments. Speaker 7: This is an historical moment. Many paths exist to further development. Speaker 3: What is really "new" is not always clear. Speaker 6: Even technical bureaucracies are trying to take on ethical concerns, but the worldview of technocrats in Europe may be totally different from those in the U.S. For example, the people in the U.S. patent office have a different approach than the people in the European patent office, where they often end up with much narrower patents. Speaker 4: Does the culture value social responsibility? Speaker 3: What is the effect of a different view of Law? Speaker 6: There are different understandings of what these technologies are and what they can do. Speaker 2: We need to revamp the FDA and PTO. Speaker 1: We need to articulate both what can and ought to be regulated. Speaker 6: What is the alternative framework that might be used to counter the dominant approach that what we are doing needs no new framework. Speaker 2: For example, gene tests are often OK'd via the 510(k) process.
TABLE 6
Facilitator: Kathleen Sloan
Notetaker: Rayna Rapp
Speaker 1: Concerned about overall control of who controls the genome. The same market forces will enslave members of the developing world. What does this all mean for the larger question of understanding the precautionary principle? What is the question biotech is trying to answer?
Speaker 2: There are heterogeneous answers to creating demands while curing disease. Who gets to regulate? Who makes decisions? How do we think about oversight? Europeans think we Americans are crazy for not regulating. Speaker 3: Where might oversight be provided? This form of logic assumes that we are already committed to a certain shape of politics: There isn't necessarily "a question" that biotech answers. Speaker 4: How does racism change on the basis of new biotech? New meanings emerge with new biotechs. The meaning gets made in a much larger context than just the technology itself. Speaker 2: We should frame it around a larger social impact, not around the specific technologies. The problem isn't that people will get genetic testing but that they'll use it for their Facebook page, naturalize genomic explanations of identity, to paraphrase Stuart Newman. Speaker 5: Biotech both naturalizes and deconstructs. The question is not just regulation, but how badly we regulate. This provides a "teachable moment." Speaker 2: First we need conversations about regulations. It is a huge step forward to regulate DTC genetic tests. Speaker 5: Social and biological science are merging in their acknowledgment of the unknown: The statement "this is the answer" no longer works. Speaker 6: If the movement is all about regulation, what is off the table? This discussion is too narrow, DTC is only part of the issue. Failure of regulation (e.g., GAO suits) is a teachable moment. Speaker 3: Venter et al. did a Science article saying that scientists need to delegate their own expertise. EPA, FDA have a specific set of norms, writing, safety/efficacy to open technological applications. Speaker 5: FDA might consider Microsort regulation by safety and efficacy. Generations Ahead raises the issue of ethics in the FDA since this is the only place to have the conversation. We are using the political moment to ask the question. What kinds of political institutions would it take to move into a different conversation, with different regulations? Speaker 2: We don't have an appropriate context for having a conversation about why ethical issues don't get asked. Speaker 3: We have a common-law framework, case law, and try to adjust new family situations to an older framework. Compare Germany: They outlaw certain kinds of families produced by biotech. Speaker 5: Are we trying to change the system or work with what we have? Speaker 4: The actors at play depend on the political moment, i.e. Bush appointees vs. Obama people. Speaker 7: How does this conversation translate for liberal donors? How do they understand biotech as not definitely good or bad. What if you asked your donors to invest in regulatory structures? Speaker 5: They answer that they support the organization, they are very specific about civil society and what is important in the technology. There is anxiety about regulation. Most donors don't see "race" but they do see social justice. And everything is quite personalized: "My gay brother needs these technologies to have a family." Speaker 4: On surrogacy research: People don't necessarily want to deal with it. So much education is needed. Social justice questions are acknowledged but not the reproduction of racism or sexism or anything else by new biotech.
TABLE 7
Facilitator: J.P. Harpignies
Notetaker: Brendan Parent
TABLE 8
Facilitator: Amy Allina
Notetaker: Doug Pet
Speaker 1: Legislation can drive public information.
Speaker 2: We need to educate people about what can go wrong. It is inevitable that geneticization will be normalized. It won't be seen as a privacy issue — having your information on the internet will be a statistical thing that will be perceived as really cool. The real threat is that people will not like their genes, or they won't like their kids' genes. Speaker 3: Can information that will be everywhere be used in a harmful way? What are the consequences, how do we deal with them? Speaker 2: You may not know something about yourself, but as data builds up, you may find it used against you, perhaps for insurance purposes. Some things we cannot safeguard against. Speaker 4: What are the points of first contact of genetic information? As with Facebook, the information itself is uninteresting, the categories are what is interesting. Speaker 2: Yes but some of these categories will be true. Speaker 1: People are talking about these things casually; does GINA cover these things? Speaker 2: The more people share information, the more correlations may be found between conditions and genotypes. Speaker 1: What about epigenetics? Speaker 2: The gene itself is acted upon by other things. Speaker 5: By focusing such heavy attention on on the validity of genetic information, we ignore that the biotech approach reinforces worldviews that may be problematic and unjust. Speaker 6: What are we identifying as the main potential harms? Speaker 7: We are lumping together a lot of different technologies. When we say normalization, do we include species-altering germline modification? Speaker 1: How do we say that there is something wrong with modifying the germline? Speaker 2: It is possible to make a stand here. Speaker 8: Fear as a reason is not good enough because it fades. Speaker 5: We need to stress disparities, and values. Speaker 7: If we could eliminate disparity, hypothetically, would it still be a bad idea? It would require a huge amount of human experimentation, and violate the Nuremburg principles. Speaker 8: IVF was once new and required the same type of invasive human research, but now it's normalized? We still don't know if it works? Speaker 5: Genetic categorization will map on to other existing issues (racism, etc.). Speaker 8: Getting from point A to B starts with animal testing. There is a fallacy that these things will stay in the lab, but animal testing is just the preliminary step. Speaker 2: Animals as a model for genetic engineering does not work when applied to humans. Speaker 1: Where is the scientific community on these issues? Speaker 2: Granting is so fraught at this point that nobody wants to be seen as a loose cannon.
TABLE 9 Facilitator: David Jones Speaker 1: Conventional worldviews don't exist, all worldviews are structures of ideology, cognitive differences, and other structures that don't change with new technologies. Part of the problem is capital and how it moves, etc. Speaker 2: Some would say you underestimate the power of technology to change structures. Speaker 3: Powers that be don't ask questions because their questions would hurt their interests. Legislators don't know the issues raised, for example, by cloning. They aren't well-informed. Speaker 4: Human Genome Project ELSI funding led to the co-optation of people like me. The program had no power. It provided window-dressing by involving "advocates" but no real change. I was supposed to represent the disability community but I was too naïve about politics. Speaker 5: In my international work, I look at countries with enough similarity to the U.S. that Americans might listen. In Canada, they were able to bring together stakeholders to a democratic process and enact policies on new reproductive technologies, genetic technologies, biotech — they insisted that everyone sit down and talk. They succeeded in business accepting a measure of oversight of biotech. Speaker 6: Having worked on GINA, I can't see those interests coming together. Why would they? They are in control now. We have NIH funding genomics and personalized medicine. Everyone has "drunk the kool-aid." The cause of many of the problems we are working on is the fundamental belief on the part of the public in personalized medicine. It's consumer fraud. The government is missing tax dollars, while scientists should be working on important human health issues. Venture capital will withdraw funds when people start seeing the emptiness of the promise of personalized medicine. The hearings on DTC genetic testing were skeptical and this raises questions about personalized medicine. We need people in Congress to raise questions about these things. What triggered the DTC hearings was the FDA raising questions. Speaker 1: DTC isn't a right-wing conspiracy. One motivation is to bypass conventional medicine, which may have merit and benefits. Basic science can always defned itself as doing important work that takes time to produce benefits. Speaker 5: It's still important to ask the scientists to show us the evidence, for example, about the value of Bidil as a "black" drug. Speaker 7: A worldview problem for many in academia is that it seems old-fashioned, religious, "moralizing," to raise questions about science that don't focus on physical risk. IRBs don't consider the societal consequences of human studies they review.
TABLE 10 Facilitator: Kari Points Speaker 1: What are the most compelling frameworks? Speaker 2: As a biologist, I'm most interested in how discourses develop as useless from a scientific point of view, i.e. how they are perpetuated and become part of the landscape. It is a way of looking at humans and enforcing social ideology, without dealing with the complexity of having to solve the social, economic, and political aspects. One example is that we don't have enough food, but that is not the problem. Arguments about technology are used to obscure technology. Speaker 3: Focus on populations that are opposed to methodologies. Biotech and genetics are conflated. We try to persuade without confronting mythologies within medicine and science. How much is market driven? Who should get tests? Who is educated? It is companies that will make a profit but people are being told they will benefit when they won't. Speaker 2: Consider how real estate connects with other bubbles. Scientists have an incentive to develop companies. Speaker 3: Technologies for information and education. DTC ads are able to persuade. Corporations went to policy-makers with information that was inaccurately presented. Speaker 4: It's important to see who is going to profit. But it's also important to complicate. While corporations want to profit, there are academics who go into communication and some people will profit. Complicate the idea of who profits. Speaker 3: There can be a false sense of security. Harms are real. Speaker 1: The UC Berkeley students giving DNA is scary. You would think liberal students and institution would be suspicious. Why do it? It's their privacy. This is the point Dorothy made — the same discourse of choice and actualization. Speaker 2: The ideology of choice transcends politics in the U.S. Speaker 5: Jennings' idea. Speaker 2: There is a social choice of technology. Decisions are being driven by particular institutions. Zoom out. Why discuss technologies of marginal use? Shouldn't there be some sort of social input in venture capital? Speaker 6: It's market driven. Speaker 3: Thirty years ago there were more factors. The people who decide are people who make financial decisions. Speaker 1: There are some examples of successful marketing of beneficial drugs. Speaker 3: The sleeping sickness drug, Nazonnathine — Aventis stopped making it. It cost $50/tube. If a drug can be sold, it will be developed. For a drug to be developed, there has to be a sub-population. Alternative market structures can be developed, then drugs. Speaker 7: Much of research is funded and patented and profiteering. Can we challenge conventional worldviews? The continuation is logical: GMO's in plants, next are animals, not humans. Market forces are a crucial part of the problem. We need a common platform to tackle a deeper problem. Speaker 4: I don't agree with the drumbeat that market is bad and quantification is bad. There is room for complexity and nuance in some ways markets will work. Speaker 7: In the progressive community, the common ground is market but also economics. Speaker 4: Market is not outside of us, it's a part of us. There is no "market interest" out there. Speaker 1: If we are talking about what steps to take, the point at which science is allowed to patent and make money for universities. Scientists are driven financially. Speaker 2: This is a logical extension, since World War II. Speaker 3: The system worked well up until 1980, with universities, patents and corporations. Corporations began controlling medical research. Speaker 2: The market isn't one entity. We have an increased role in the 1970's. Financial decisions are only relevant decision-maker. The ways finance are done dominate within a legal framework. Speaker 4: We are having a conversation and talking about the definition of markets. Speaker 3: What do we do now? What do we want? Do we want something? Speaker 8: We are talking about trans-boundary issues. Speaker 9: We need to educate the populace. Speaker 3: Educate the public. Speaker 1: Communicate about issues to the degree that climate change is communicated.
TABLE 11 Facilitator: Andrew Thibedeau
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