Compiled notes from Grounding our Concern table discussions

Compiled notes from Grounding our Concern table discussions
Grounding Our Concern



Facilitator: Rajani Bhatia
Notetaker: Kathy Sloan

A diverse group of participants included a scientist doing stem cell research, health and women's rights advocates, a policy & legal analyst and a sociologist. Grounds for concern included the media's treatment of biotechnology issues, how religious people view these issues, consumer culture and the driving force of the market, generational divides on these issues, gender selection and women's rights, commodification of women's bodies, and turning children into products.

The main consensus centered on the fixation of society on technological quick fixes; we all are brainwashed into believing that any and every problem can be solved by technology rather than working together as human beings to devise solutions that respect human rights and the environment. There is nothing to challenge the idea that technology can solve everything. People consider genetics to be sacred.

There are parallels between Christian Evangelicals and secular humanists; Evangelicals' view is that we are all children of God and therefore we must value human life while secular society's view is that it is immoral and unethical to treat people as products. Technology is teaching us a new idea about what it means to be human.

Scientists also place different value on different body parts; they have a hierarchy of what kind of genes are valuable and which are less so. They differentiate the human body and place value on certain types of body parts more than others.

As we commodify our children, we destroy an essential essence of what it means to be human. There are real harms to human beings, not just symbolic harms. For example, forcing women to have Caesarian births rather than vaginal births.

Discussion also took place about how different universities deal with the ethics of biotechnology issues. More patients are coming through university labs, transforming research into applied science. Scientists are making embryonic stem cell lines from donated eggs. The most significant factor is that scientific research has been transformed into a tool of profit-seeking corporations. Scientists now have to make statements in grant applications about how their research can be marketed. Rather than conducting scientific research for altruistic purposes, research now exists for commercial exploitation and any semblance of balance has been lost. Conflicts of interest have corrupted the scientific process.

Another major concern expressed related to the fact that as a class-based society, the have-nots are prevented from accessing technology and are often further victimized by it whether it's poor women having their bodies used in surrogacy or communities of color having their DNA profiled in databanks by the criminal justice system. The have-nots are excluded from the conversation and have no voice.



Facilitator: Deborah Bolnick
Notetakers: Alexander Gaguine and Deborah Bolnick

  • There are many concerns – social, environmental, food. How do we get disinterested people to understand?
  • How do we get a democratic society to discuss? Something is wrong – it's very hard to get a coherent discussion. Jaded.
  • Dominance of market; commoditization. Need a new balance. False markets, too – e.g., pet cloning.
  • How to get subtlety in media and political discussions. Intersection of science and policy.
  • All about "choice." All cultural forces are individual; suspicious of religions; societal attitudes are worked out in the market.
  • Concerns still don't seem real. Incremental.
  • "Advances" either too far away, or current situation not so bad. Ahistorical.
  • Strong cultural forces-messages.
  • But do we really have choices?
  • "Creating the perfect child is a social good?"
  • Much harder to be a woman of a child-bearing age.



Facilitator: Jenny Brian
Notetaker: Jacob Moses

Speaker 1: Everybody here has some potentially intense personal concerns – backstories that brought us here. I have a disability that was one of the early targets of PGS. We need to recognize how centrally these stories affect our views, our thinking, our ability to build community. I'd like us not to rush to point, counter-point – to remember that there are stories there. Also, we're all people with bodies. I really like how you (Speaker 4) talked about women's bodies. Our bodies are really important parts of the discussion. I want us to appreciate each others' needs.

Speaker 2: I think that the most compelling theme throughout was the economic forces behind a lot of the issues we're talking about. Who's developing these technologies, who will benefit, who won't have access. Those economic driving forces. That was my first reaction. I'm pleased to see that a lot of the speakers talked about that.

Speaker 3: In the women's health and reproductive health community that brings up some tensions. So much of the work pushes against the idea that government regulation of women's bodies can be a helpful thing. It can be very harmful. I come to it with that tension very present in my mind. Some of what people were saying that I found intriguing had to do with the ways that this is a women's issue, but the ways that it's not. The idea that "science is going within our bodies" is very interesting. Women have a lot of experience of science happening within their bodies even before genetic technologies. That was percolating for me.

Speaker 4: One of the funders at a planning meeting said "what about men"? Women are the most complex, but it will be a foregone conclusion that men will follow. Everyone comes from women, but taking on the more complicated process, men will follow. Isn't it the abortion issue in this country that keeps this conversation very contained? French and Germans have no trouble saying, we want reproductive autonomy AND a voice in the debate about information commons.

Speaker 1: We have to figure out how to talk about abortion. It's a huge elephant in the room.

Speaker 4: What if we reverse it? How to talk about these human biotech issues without being dragged into the abortion debate.

Speaker 5: It's true, but that issue definitely gets in the way [in the UK] also.

Speaker 1: Some groups agree to disagree. I think that we have to talk about abortion. There's an interesting bridge that disabled persons can bring. I have spina bifida. We have a romanticized connection to fetuses. There's a funny legitimacy in relationship to the fetus — it could have been me. Because of the charged issues around disability, it's recognized as a place to go. We do need to recognize the fetus as a thing AND a being.

Speaker 6: Is it a question of fora – where this conversation happens.

Speaker 3: I think that the forum matters in one specific sense. I think that in the legislative forum, this is not the place to start because there's so little room for creative thinking and innovation. What we are talking about is changing the public conversation, so it needs to be lots of fora.

Speaker 5: I was very struck by the fact that we had two very articulate presentations about a women's perspective, but we didn't have anyone who seems to stand for human beings in general. What I missed in this section was a kind of really big picture, which is capitalism. It looks to me that we've lost over the last 20-30 years is a deep understanding of what it means to be in a capitalistic society with these technologies. We're missing, I think, a big perspective about this whole thing being not just science and a process of science – but an intermeshed process of science and capitalism. One thing that I want to put down firmly is that secular liberalism is considered the highest level of goodness in this country. For me this is the problem, and not the solution. It is what's driving capitalist modernization. If we start looking for the solutions in secular liberalism, we'll get nowhere.

Speaker 7: Does that tie back at all to what one of the speakers was talking about hiding in markets. To carve out these new conversations, where we have more control than we think.

Speaker 5: Ideologies of science and capitalism both appeal to objectivity. I was disappointed with the wave of the hand that we're not going to abolish markets. Maybe we have to.

Speaker 8: Not leaving the market to the market is not a new issue – especially in Europe. But interestingly from a European perspective, what you (Speaker 1) end up criticizing is the government. We care a lot about accountability, transparency, participation. What do the market and science drive, what's the role of government in accountability (e.g. funding priorities). That's a big theme.

Second, I was working mostly on intellectual property issues. The forces of capitalism were right in my face. I think that we need to account for that as well here. I don't want to push it aside, it's very present. One thing that struck me, as George Annas was talking to all of the promises that have been made in this space (things that haven't happened), then I feel that this community here is saying that it's a failure. Are we saying that it's a failure that we shouldn't do it at all? What would a public interest contribution to this debate should be? Stop NIH, Wellcome?

Speaker 4: I thought that he was saying look at the hype, give us money, what do you have to show for it.

Speaker 5: That's an accountability issue of a sort – and the ethics of selling science.

Speaker 7: And then what's the policy recommendation – or not.

Speaker 4: Biotech sends lobbyists with deep pockets.

Speaker 2: How are those decisions made? Right now we don't a have a way to debate what we want and what we don't want – or to assess the science. We are questioning whether the technology will achieve these things, whether it will be the solution. The technology problem begets a technological fix.

Speaker 3: I think that the accountability piece comes back to whether science can be a neutral arbiter. I'm a big supporter of the reestablishment of the Office of Technology Assessment. I think that we invest a lot in science addressing these bigger questions that we deal with. It's a tension. We pride ourselves in having evidence-based policies; and also value women's perspectives. We should not be willing to turn it over to the scientists.

Speaker 7: We too often privilege one way of knowing.

Speaker 1: What about health disparities. Is the 60-year-old mother a happy outcome? Babies are dying from hunger right now, and yet we're designing new babies. How do we fit that into the conversation? It's bizarre that we're not talking about that.



Facilitator: Diane Beeson
Notetaker: Brendan Parent
  • Is there a way to change behavior without regulation? Is there a way, without regulation, to change the fact that people with least power suffer the most?
  • I have two concerns: First, regulation cannot be enforced! Different countries have attempted to regulate ART. Canada followed Britain and Germany. It tried to find middle ground, spent 29 million dollars on hearing from all sectors of society starting in 1993. An act was passed 2004, but the agency is now completely bogged down. Meanwhile, the technologies have proliferated under the 'self-regulation' model.

Second, regulations need to be made common among different jurisdictions. People move from country to country, and regulation in one country may not exist in others. There needs to be commonality among different jurisdictions regarding these technologies.

We need to find ways to use technologies so that they do more good than harm, and so that they do not make people commodities

  • I am skeptical about making women's bodies the focal point. Women get positioned as hapless dupes, as not having agency and decision making power. How do we not reinforce paternalism, and the idea that other people have to "protect" women?
  • Often "Science" and "Market" seem to be value neutral but are NOT. Women play an interactive role in this game. We need to work with women and talk with women, to show them how they are captive in a certain mind frame that is set by the technology, Imposing on them enormous burdens; it has become almost compulsory to use these technologies! There is suffering if you cannot afford to use them.
  • How do we talk about spirit? Progressives are worried about being pigeonholed in religion. EMOTIONAL INTELLIGENCE is a more legitimate way of framing it. What does using emotional intelligence look like? This would take emphasis away from matter, and put more on process and human relations, on the quality of the experience, and on listening to each other and allowing people to speak to each other. Women are separate and divided when they go through these issues. They are under enormous pressures. Women, as consumers feed the market. When we say that if a woman demands treatment, we can't say no, it can sound like rape: 'She was asking for it.'
  • If women are the biggest demanders, how do we change this demand? Communicate with them at an earlier age? There is a divide between women of previous generation and current young people who have embraced the technology.
  • Another factor is that women have come to feel that they will live in poverty if they have children at a younger age, without having certain achievement markers. How can we change that framework and still encourage women to succeed and embrace independence and success?
  • It's about building a social movement, not just talking to women. What happened to women's choice? The more educated women are, the more critical they are. Let's talk to the women who experience what we see as suffering. Do they think they are experiencing suffering?



Facilitator: Michele Goodwin
Notetaker: Erich Pica

Facilitator: All of this is occurring without a public discourse. What are your foundational concerns and core issues for this meeting and the larger public debate?

  • The notion of genetic determination. Your genes are you.
  • Commoditization of the human body and child of products.
  • Eugenics, and how it is being sold to the public. There is a racial purity element to the ongoing human genetic debate. Are we having privatized eugenics?
  • The issue of public discussions. If people are feeling the fallout – such as damage/compromise of their child – they get involved. Example: the clean water fights of the 70s-80s. People are not feeling these issues on a personal level. There needs to be a place for anticipatory concerns.
  • Liberal eugenics (new eugenics) is non-governmental, and it is non-discriminatory. How do we have the discussion about eugenics that comes from outside the government? Congress passed the genetic non-discrimination act. Who pushed this forward? Liberal eugenics means both personal choice as well as libertarianism. Within the USA, there is lack of acknowledgement/recognition of class-based discrimination. This is not true in Europe…elsewhere.

Facilitator: What points raised by the presenters do we find compelling?

  • The question of parental selection versus parental nurturing. What is the difference? Response: There is a difference between teaching your kid to play piano versus building a biological expectation. Will there be more or less class segregation between biological or nurturing parents?
  • We missed hearing that the same tools can be used to create science-for-the-people projects. In the US new genomics is linked to individual choice. In some countries these tools are used for the public good. Is food genomics a form of positive use of these technologies?
  • The science of genetics is very contested.
  • What about the use of DNA in the court rooms? This is an urgent issue that needs to be discussed.
  • We need more of discussion about public involvement. Why is the public not involved?
  • There is a discussion that needs to occur about whether or not these technologies and the pursuit of these technologies are moral. Just because we can…should we?



Facilitator: Molly Maguire
Notetaker: Milton Reynolds
  • Concern over framing these issues as technical problems – there's a lack of complexity in this framing which can truncate the understanding of these problems.
  • Jacques Ellul writes about how technology is the framing of the west. Kwame Appiah's work might add to this discourse.
  • The embargoing of politics within the larger discourse seems to be an American particularity.
  • In the US politics has become intertwined with an unquestioning embrace of science/technology – to be a good progressive means an embrace of science.
  • We formed the Prochoice Alliance in California around Prop 71 – trying to dislodge the binary construction that limited stem cell initiative discourse to "Bush v. anti-Bush."
  • How does one have conversations in a rapidly changing field of discussion? The difficulty of the conversations makes it a challenge to engage the public in general…
  • Right/Left political frames are the well-rehearsed frames of the discourse. There are other questions – suppose I don't resonate with any of the issues (medical/technological) – then why should I care? The discourse around Prop 71 did serve some of the larger interests by engaging the public in a broader debate, e.g., IP policy, and whether the public good is compatible with technological solutions to social ills. One could reasonably engage the broader imagination about shared interests, shared common ground...
  • There is pseudo engagement – until people grapple with the deeper meaning we'll be in circular or dead-end conversation. The covenantal framework provokes a reengagement with the Hippocratic Oath. A lack of relational thinking is a part of the problem…we need to challenge the patterns of knowing constructed by the institutions…
  • We have intractable social inequalities in this country and as such technology becomes an easy fix.
  • John Searle asks, how does language shape the world? Where do we find the places where in the US to have the discussions? Where and how do we dismantle the shared assumptions? How do we re-message or reframe the message…
  • The idea of covenantal re-conception is helpful – reconnecting the state and science. How do we make promises to each other about a shared future we seek around human health? Semantics matter: contract and covenant mean VERY different things.
  • Our historical understanding or lack of understanding of these issues challenges our ability to formulate a more complex and meaningful discussion. Most Americans accept the notion that eugenics was primarily a German phenomenon or that America gave up any of its connection to these ideas in the aftermath of WWII. The idea the eugenics existed as a pseudo science or that to the extent it was here it was primarily the domain of the political right/conservatives leaves progressives on a slippery slope and in many cases in a less defensible position.
  • Our relationship with knowledge often creates hierarchical (relative) positioning rather than (relational) positioning; rather than assuming that the purpose or value of knowledge is to assert one's position/status, what would happen if there were one of accepting the idea that we'll know more collectively than we will individually?



Facilitator: Matt Lamkin
Notetaker: David Jones

Speaker 1: What do you mean by "symbolic harm?"

Speaker 2: It's a response to Art Caplan and John Robinson. They scoff at concerns like the ones that motivate this conference. They think there are no problems with markets, genetic selection, etc. They say that critics have no data, that there are no real problems yet, that it's all speculative. They ask, what's all this social justice bullshit? As critics, we need to articulate what the problem is

Speaker 3: I agree that people only respond to actual harms to actual people. My concern for us as a community is moving forward, direct action. How can we move from conceptual framework of harm to actual programs? :egislatures, policy makers, media do not respond to conceptual harm. The media want real victims.

Speaker 2: Suppose we want to say there is something wrong with markets for sperm. Should we find people who were made through these? Art Caplan and John Robertson would say, without those markets, these people wouldn't exist, so what's the harm?

Speaker 4: I teach at Cal State, and my students do care. They have few resources, and feel at risk of exploitation. Abstract concepts feel very real to them.

Speaker 3: We have been involved with Berkeley case, a program of voluntary collection of 3 gene variants as part of a discussion about genetics and personalized medicine. We've just started talking to the students. What we've found: students have no problem with program. Students who aren't participating – it's because their parents won't let them, not because they don't want to.

Speaker 5: Let's ask ourselves, if we are trying to lay a foundation for our concern, what are we trying to accomplish? What can we build in to our efforts?

Speaker 4: We should always be talking to young people. If we can get to freshman early, e.g., teach them about eugenics.

Speaker 2: Suppose they hear about eugenics, will they be concerned about current technology?

Speaker 6: Responding to Carmel Shalev's plenary remarks: Why have we let technology take over pregnancy?

Speaker 3: Some of these technologies rob parents of aspects of the experience of pregnancy.

Speaker 6: But they allow parents to make choices. What are the boundaries between choice and responsibility? We can cure some things in utero -- how can we not allow it?

Speaker 1: Have there ever been actions based on symbolic harm?

Speaker 4: Yes, the sentiment against GMO foods in Europe was based wholly on potential harm.

Speaker 3: …and also on anti-capitalist sentiments.

Speaker 1: In discussions with my family, they want something more than symbolic harm.

Speaker 3: Is the onus on us to prove the harm? Or should the onus be on the boosters to prove the utility? We need to take back personalized medicine from genetics. Francis Collins has skewed funding investments without evidence of utility. The biotech industry is heavily invested. Individual researchers have all had to buy in, because that's where money is. Congress is considering legislation on personalized medicine that will lock this in. Collins says: however long it takes, we will do what is needed to achieve personalized medicine. Everything is tied up in the belief system that "genomics is central." How can we tear down that wall?

Speaker 2: So what's wrong with the Berkeley program?

Speaker 3: They are being sold a bill of goods – that this is a kind of useful knowledge production. No one is challenging the value or funding of personalized medicine.

Speaker 6: Could we follow students over the year to see if anything changes?

Speaker 4: We were able to get a bill through the legislature to get warning labels on ads recruiting women to provide eggs. We organized students to write letters, go to Sacramento, etc.

Speaker 3: Legislation is an excellent option. We need to build coalitions, show support.

Speaker 2: If we ban paying for eggs, what about sperm? We need to be consistent.

Speaker 4: But it's not the same -- you just need a Playboy magazine.

Speaker 2: That's not the issue. Human life should not be paid for. No one should be paid for their genetic material.

Speaker 1: How can you mobilize the public will needed to make legislation work? There is no public well for any of this.

Speaker 3: You can build that. I worked on GINA from the start. We were able to get media coverage, public discussions, etc. GINA served as a teaching tool – not just for genetic discrimination and misuses, but about genetic education more generally. If you get one legislative win, you get a teaching tool forever. You don't always get what you want, but if you get something you can build on it.

Speaker 4: If we want to reach beyond confines of this room, are there any options beyond legislation?

Speaker 2: What about media?

Speaker 4: But the other side has the resources and has better access to media.

Speaker 3: I am married to a journalist, I can say that the best vehicle is legislation. If you even get a bill introduced, you can get air time from media. They really are incredible vehicles for education.

Speaker 4: Once proponents of a technology see your strategy, they will start their own strategy as well, always faster and better funded.

Speaker 3: We just need to find the right correlations - e.g., we made the case that GINA was needed so that research could go forward. This got buy-in from industry, at least to point where they didn't oppose it. Find whatever bedfellows you can and use them!



Facilitator: Magdalina Gugucheva

  • Omissions in the discussion so far: Best interests of the child (as opposed to the rights of the woman, parents, etc.)
  • Concern that woman were portrayed as victims in the presentation, also that there was a lack of specificity – what country, what experience?
  • One speaker raised a question about the need for data, as opposed to assumptions such as that markets are bad. This led to some discussion; some thought that ethics does not arise out of data, others that gathering data provokes ethical issues.
  • Specific discussion about donor-generated kids. Some similar discussion re adopted children, especially those who do not know their biological parents.
  • Separate concern about the line (if any) between private and public spheres.
  • Quick mentions: rhetoric of choice in different contexts, what is meaning of "informed consent?"



Facilitator: Radhika Rao
Notetaker: Osagie Obasogie

Speaker 1: Why do we care?

Speaker 2: The notions "human" and "human rights" are not being questioned or interrogated. I don't like using their notions (rights, dignity, etc) – these are deeply flawed. I am concerned that they are being used uncritically.

Speaker 3: What values do you use? What is your moral compass?

Speaker 2: I follow Peter Singer. Value is self-defined and relative.

Speaker 4: How do you deal with the problem of calculability? There are impacts that cannot be calculated or predicted.

Speaker 2: I don't think human/environment can be separated. Without looking at something else, concept is concerning.

Speaker 3: We have to look at how people treat each other. Some humans are privileged and use this privilege to harm each other.

Speaker 4: Expanding concepts to non-human entities that have similar qualities such as dignity challenges this hierarchy.

Speaker 5: In utilitarianism, whose preferences are centered? We need to rise to the challenge of bringing in the common good, or transcending individuals' or particular groups' preferences.

Speaker 6: I'm less inclined to think about large framing issue, more interested in unintended consequences and ways of thinking about individuals' lives.



Facilitator: David Wasserman
Notetaker: Julie Harris
  • Adrienne Asch raised concerns about selection. Meanwhile, organizations represented here provide women with access to technologies. So how does selection play into the agenda?
  • (A response from a representative of one such group): In terms of technologies to select – we have not said as an organization that we are going to support those. We have said that there are some concerns and in order for us to support it and promote access we think there are a lot of understandings about what those options provide, what they don't provide, and how to equalize the technologies (access being an issue). The Kennedy-Brownback bill requires accurate evidence-based information on a range of outcomes for people with genetically diagnosable conditions. Is this a good bill? Is this a frame for encouraging actual informed choice? We could welcome the wealth of types of information on these conditions.
  • Consumer culture goes beyond just providing information and giving people choice, it is informed by a type of ideology that people use to shape their lives, etc. The ideology itself is trying to get people to weed out the outliers. Will regulation get at the equalization of this information?
  • There is a problem with the deepening of the genetic information divide. The more that genetic information becomes relevant, the more that people without that information are put at a disadvantage (i.e. people who do not know their genetic history). Adoption is the beginning of this and then the same access-to-information problems are replicating in other scenarios. Each of those scenarios reproduces a certain type of selectivity and replicates that genetic divide.
  • What about the use of medicine (i.e. physicians) and medical training for these things? The profession itself doesn't want to take a stand on this, consumers are driving the medicine. There is an inappropriate use of medical time/training to this… Is there any systematic examination of how research is getting funded? What the funding priorities are? NIH research doesn't fund much in the way of reproductive technologies, but they do fund the NIH human genome research institute.
  • Up until now, genetic science has allowed prenatal selection, but the next step is putting genes into embryos. Will people start saying, I want to have a better baby or have a baby that has genes that I don't have. Will there be receptivity to these technologies in the future?
  • Where do human rights move into entitlement? Will there be a market for that type of service?
  • I am less concerned about designer babies because genetic scientists have so much trouble finding the areas in the genome that would even be useful. With a pre-defined phenotype it's hard to disentangle the genetic basis. But if you take a mouse and put a gene in, you get a major difference (e.g., mice can run through mazes faster, resist pain, etc). So, there's a rational pathway and by tinkering with it you may get the desired result and you can see people saying it's rational and you can get it to work. I could see that the future holds some of these 'engineering' solutions. Objections based on science will dwindle and only the ethical issues will exist in the end. Would genetic continuity be the countervailing influence? We said we couldn't do a lot of things and now we can.