Advocate Summary

Issue:  Human Cloning
Advocate:  Boston Women’s Health Book Collective – Judy Norsigian
Date of Interview: 8/29/02

Basic Background
Well we’ve long been on the Human Genome Committee for the Council for Responsible Genetics so we work with people like Stewart Newman, and I’ve been on the advisory board for many years. So we were familiar with a range of genetics issues and cloning wasn’t one we had previously focused on, we focused on reproductive technology, genetic engineering, the question of designer babies, which is much more of a theoretical/ hypothetical one but theoretically we took a position on it that we just didn’t think I was a wise way to proceed, first of all to design, perfect human people, make them more intelligent or whatever, if that in fact could be done and the other was resource allocation, and being yet another should for women – as you know there’s been a lot of pressure on women to undergo some of the existing reproductive technologies that are mostly in the infertility field simply because they are there. They are often very, very inefficient, the efficacy rates are low but one does it because it is like you build the field – they shall come. But so we were working somewhat on the issues regarding women and reproductive technology and genetics and then this issue sort of hit the news, more in terms of the high-promising therapies, not so much about human reproductive cloning, but as you know there are some loonies out there that want to do that. 

And we at first, internally, wanted to make sure we didn’t spend too much time on this issue, because there are so many women’s health issues, and this was grabbing the media so it could consume everything, and then we realized it was an incredibly interesting and important example of how difficult it is to keep control over the message you want. So it for me was a very good case of the influence of their message was so powerful and that they could go in because they had so many lobbyists, thousands of them, that they could cover the whole of the Hill, and put a spin on what we did that didn’t really reflect what we were doing. But picking up the pieces was impossible with a tiny staff and they know that. So one of the things that we learned from this was that we got some more experience with what kinds of problems you may have and if you even have a prayer of offsetting a huge amount of money, and time, and staffing for a campaign that is antithetical to your own. We also saw this as emblematic of allocating resources for hugely expensive technological innovations that kind of sound to the public that it’s about disease curing but it’s really about marketing something to a very large well population – human performance enhancement, that’s really sort of the underlying goal, a lot of the money that is behind it, not that the scientists working on this don’t have sort of just reasons and the good of human kind in mind, but some of the people that are pushing this for a money making scheme have seen it as a vehicle for creating a market for products, basically human performance enhancement that don’t have to do with curing diseases. I haven’t seen anything that ascribes this to a particular person  

Prior Activity on the Issue 
[See above]

Advocacy Activities Undertaken
So we got moved from, not the Council for Responsible Genetics, but some of the colleagues and people approached us that the women’s reproductive rights movement was kind of being used by biotech, to argue the case that if you were at all pro-choice you shouldn’t be critiquing cloning because that is an anti-choice position. So they tried to characterize any critic of cloning as an anti-choice and that’s when we got involved because we didn’t see the link at all. We can understand that you can have guilt by association, in the past we had problems with depro-provera where we opposed its approval, we thought the safety data weren’t adequate and so the right-to-life groups opposed it too, but for very different reasons, and we kept our positions quite separate. So what’s interesting about this one is that there are some people in the so-called right-wing or anti-choice community, they have a whole separate set of arguments around cloning, that don’t have to do with abortion and that’s not why they care about it. There are others that do link it to. Strategically we have agreed among ourselves, on the pro-choice side, and many of the conservative groups have agreed that maybe it was a strategic error that has caused a lot of grief to those that are opposed to cloning, human reproductive cloning and are concerned about the misuse of so-called embryo cloning for research purposes and whether or not that even makes sense right now. Some are totally opposed and want a moratorium but those on the right that have linked the two issues – cloning and abortion – have done everyone a disservice that is a critic of cloning. Our friend in the Senate, Brownback, and I’m joking, but his counter part – and this isn’t something you can say because I don’t think it is something that has gone outside of sort of closed inner circles but there are folks who work closely with Weldon who agreed that he has been concerned with and upset by Brownback relating the two. I don’t know if you’ve seen it but Senator Brownback is constantly linking the two, if you read his statements and congressional articles, papers and articles in the press. Anyone who wants to make a separate case against cloning is constantly running up against the prime sponsor of the bill in the Senate constantly mushing the two issues together. He kind of stopped doing it but it was too late and for a long time he did. So we started to get involved because of Rich Hayes at the Center for Genetics in Society – that’s a key player in this debate, Marcy Darnovsky is the associate director and she has been very involved on the women’s issues. She’s also someone who’s worked closely with Judith Revine, she did a piece in World Watch, that is probably the best four page summary of the women’s issues. We’re kind of not so much engaged in the human reproductive cloning stuff because we feel that most people agree that there is overuse of limited resources in the world today and that most of that is serving mostly a narcissistic contingent and there’s a lot of baloney about oh there’s a small number of people who would have infertility problems that it would help them, that’s really stretching it way beyond what is reasonable there are a handful of people that people could arguably make the case that this and only this would help them  have biologically related children, but it is such a small number and it doesn’t warrant the kinds of slippery slopes that you enter when you do this. So we put that aside and what we were working on was the question of whether you should allow any embryo cloning for research purposes alone, right now the case could not be made that one should go forward right now. 

So these points have been summarized, presented at our meetings, before Congress with members of the media.  

[She mentioned after the interview that she went down to Washington for Hill visits many more times than she would have liked, but other participants kept asking her to join them for staff and member meetings.]

Future Advocacy Activities Planned
No specific activities mentioned.

Key Congressional Contact(s)/Champions
None mentioned.

Targets of Direct Lobbying
None mentioned.

Targets of Grassroots Lobbying
None mentioned.

Coalition Partners: Names/Participants
I was actually getting information and advise from mainly Steward Newman he was my main collaborator, we both testified two or three times together, two Senate hearings, one House hearing. And a couple of people at Center for Responsible Genetics, but those are the main people I would turn to. And we would run our materials by other women’s health activists. And the document that was our statement that was signed by over a hundred people – that was our major advocacy reach that got out there. So that position on cloning - so that was a year ago January, the last time it was updated with signatories, because people kept adding their names was February 2001 – and that was a more interesting example, where we worked on the statement with about eight or nine people, George Anis, Leonard Glance, Lorry Andrews, Rich Hayes, and I don’t remember who else weighed in, the International Center for Technology assessment, - Andy Kimbrell, he didn’t work on that but we worked with him on things later on, and Doug Hunt too later. So it’s a snowballing effect, you start putting things out, start testifying, and then your in the media and people keep calling you and so there were a lot of requests to present a woman’s point of view, or a pro-choice critique.  

Other Participants in the Issue Debate
None mentioned.

Ubiquitous Argument(s) and Evidence
So we put that aside and what we were working on was the question of whether you should allow any embryo cloning for research purposes alone, right now the case could not be made that one should go forward right now. We have a lot of reasons. Maybe anyone of them alone wouldn’t be reason enough to say we need a moratorium on cloning for any purpose but all of them together add up to quite a compelling argument. One of them of course is whether or not, in the absence of very clear, really we need an international treaty or framework, so in the absence of that if you start cloning human embryos there is just a matter of time before these crazy physicians, some of them want to do human reproductive cloning that may happen. It’ll happen probably anyway but it will speed up the process. So the likelihood of human reproductive cloning occurring goes up, even with allowing embryo cloning just for research purposes. And then another thing was the whole issue of equity and social justice; how we should be spending resources, even though one could argue you know this is investor money that might not be spent somewhere else well those investors will find something else to invest their money in that might be much more useful and get them a profit. So there is this question about social justice and equity and if you’re going to be working with technology which only a few rich and the elite would have access to, you have every example in the book to look at now, expensive therapies, all the reproductive technologies everything they’ve developed has hardly been used by low income. And then the whole question of “do you really need to do it now” because most of the science is struggling around whether embryonic stem cell research will even produce viable therapies, put aside clonal embryos so there is a genetic match with the patient, but can you produce them, can you solve the problem of tumor genecity and lack of control over differentiation so that you get the kind of cell time you want those are the two things they haven’t been able to do with stem cells, though they have been able to with embryonic stem cells although they have been able to solve the tumor problem if they go to a later stage and get germ cells from fetuses that is very different, because nobody has been talking about using, growing these things to the fetal, six, seven week stage and harvesting embryo germ cells. But they did do that in animals and they did get therapies that did seem to be working. So our position was continue with embryonic stem cell research but not cloning and if you can overcome those two obstacles you start to build the case that maybe clonal embryos are needed, but for right now the case, we feel can’t be made, because you don’t even know if this approach is really even a viable one. Also, the few studies that have been done on clonal embryos that are genetically identical to the patient, they thought that they wouldn’t incur immune rejection but that’s not true, in all studies that have been done it has been shown that genetically identical cells to the patient still produce this sort of immune rejection and they don’t know how to deal with that yet. And that is probably because of the mitochondrial DNA that comes from the egg from the mother, because it’s not exactly the same thing. So you have other genetic influences, but they don’t even know. And their response to deal with this rejection is to use other drugs. And then the thing that actually drew some of the most interesting responses, from the media and from members of congress was the point we made about risks to women from whom they harvest the eggs. We do not have good data on the safety of it, in fact we have a lot of scary data that suggests it could be extremely problematic, it is problematic, it causes a lot of problems for women – adverse drug reactions but we don’t have good numbers for that. So these points have been summarized, presented at our meetings, before Congress with members of the media.  

The Lupron-acetate, I would say that of all the arguments we would make to members of the House and Senate and to their staffers, especially the women who work in the offices, that would be the only one that was ever a show stopper, and many were appalled to find out for the first time that Lupron is not even approved for this use by the FDA, it is approved for three other purposes, not for IVF. Oh, and there was a study that was underway, and they stopped it, and no one knows why, that would have created the data that would have allowed them to get new indications at the FDA.  

Secondary Argument(s) and Evidence
[Not secondary – a number of primary arguments]

Targeted Arguments, Targets, and Evidence
None mentioned.

Nature of the Opposition
We also saw this as emblematic of allocating resources for hugely expensive technological innovations that kind of sound to the public that it’s about disease curing but it’s really about marketing something to a very large well population – human performance enhancement, that’s really sort of the underlying goal, a lot of the money that is behind it, not that the scientists working on this don’t have sort of just reasons and the good of human kind in mind, but some of the people that are pushing this for a money making scheme have seen it as a vehicle for creating a market for products, basically human performance enhancement that don’t have to do with curing diseases. I haven’t seen anything that ascribes this to a particular person, there have been allusions to internal documents – they weren’t described in detail probably because the sources didn’t want to be caught, but it would appear, if you look at what people said publicly, even Thomas O’Conner from Genro, the spokesperson for bio, he’s the one who testified at the first hearing. You see that they’re careful not to use language that could be construed as eliminating the use of these technologies for other kinds of genetic engineering and when they are asked point blank, they won’t say no. That’s one way you can kind of infer there is another agenda there. It’s not a popular one, and what we’ve understood is you know changing customs and practices happens slowly like sex outside of marriage – well that was totally not permitted and not talked about, incontinence – no body talked about it, they didn’t advertise diapers, more and more it is more talked about it is more acceptable, incontinence is not as much of hushed thing as it used to be. I think the plan is, or the hope of these people is to kind of keep pushing the envelope, so that they’re level of social acceptance for human genetic engineering. They also want to apply it to other things plants, agricultural crops, GE foods. And they are just saying “oh these people are just Luddites, and naysayers.”         

[Impediments]
The most interesting part of this story is how our message has been distorted by members of the media. It has been very hard to conclude anything but that it was deliberate. We had long conversations with them, for example one conversation opened, the major thing we wanted to get across – that the media need to do a better job of – is distinguishing between embryo stem cell research and cloning embryos, because they have been confusing the two so much that anyone on the street would think they were the same thing, they wouldn’t be able to distinguish them. So they made it sound like you were in bed with the Catholic church and the anti-choice, anti-stem cell research which we weren’t – we were constantly saying that. And so the New York Times article which is a good example of this. So we wound up having to dig out of a lot of misrepresentation of our position. One of the things that saved us is that members of the public knew full well what our overall position was, they knew full well that we would never take an anti-abortion position, and that there had to be some misunderstanding here. So, it was this strange bedfellows stuff that kept happening over and over again – blown way out of proportion. And yes it was interesting to have people that generally are on opposite sides of an issue to agree on something but it wasn’t surprising if you look at the reasons.  

And we at first, internally, wanted to make sure we didn’t spend too much time on this issue, because there are so many women’s health issues, and this was grabbing the media so it could consume everything, and then we realized it was an incredibly interesting and important example of how difficult it is to keep control over the message you want. So it for me was a very good case of the influence of their message was so powerful and that they could go in because they had so many lobbyists, thousands of them, that they could cover the whole of the Hill, and put a spin on what we did that didn’t really reflect what we were doing. But picking up the pieces was impossible with a tiny staff and they know that.

Ubiquitous Argument(s) and Evidence Articulated by the Opposition 
Their public position is that one should never stop the advancement of medical research; this holds promise; even if it doesn’t pan out we shouldn’t stop it, we don’t even want to set a precedent for that; and then they’ve brought out all the disease organizations all the advocates for the people that have various kinds of auto-immune disorders. And you have them personally you know lobbying for this, not the researchers and not the industry but you have the Chris Reeves of the world and that’s a powerful force, that this could get me on my feet, and pull people’s heart strings, and how could you say no? And of course that’s making the huge assumption which is that this research would ever actually wind up helping these people. But that’s been the main tactic – associating this work with bettering peoples lives and by opposing it you’re saying you want those people to stay ill or to relegate them to death at a young age. 
 
Secondary Argument(s) and Evidence Articulated by the Opposition
None mentioned. 

Targeted Argument(s) and Evidence Articulated by the Opposition (and Targets)
Obviously they will tailor their arguments but I have not looked at their materials that closely. What I do is read what they say in the newspaper and in the public. But they have prepared materials for websites for stockholders, for investors – I haven’t looked at all that. But we know that the money is down, as you’ve probably heard, they are having a lot of trouble raising funds for all of these efforts. It has been years that they’ve been investing and nothing has really come of it and they are seeing it as too politically volatile, a lot of investors are going and doing something else. Ultimately that will drive the research agenda. All of this attention in the papers had nothing to do with scientific merit there are many other avenues of scientific research further along, much more worthy of public attention yet there is no industry with a huge budget assigned to getting coverage, and getting investors, and getting people excited about this area of research. Many scientists, even ones that don’t agree with us, that support embryo cloning, also said this is a lot of hype, and the science isn’t there, years of research and no therapies yet.  

Described as a Partisan Issue
No

Venue(s) of Activity
Senate

Action Pending or Taken by Relevant Decision Makers
[The Senate has yet to vote on a cloning bill. ]

Policy Objective(s) and Support for/Opposition to the Status Quo
Opposed to the status quo, supportive of legislation banning human cloning.

Advocate’s Experience: Tenure in Current Job/Previous Experience
[She noted this information was on her organization’s website]

Reliance on Research: In-House/External (Code for Organizational Advocates Only)
The research would largely be done by people we trust, like the professor at NYU University medical college Stewart Newman or Paul Billings, a geneticist, people who are in the field, read the literature everyday, read the articles, occasionally public health folks but mainly people that actually know the material pretty well. People that we know don’t have another agenda possibly, those are the folks who’s research we would depend upon. We haven’t done our own primary research, we’re too small for that, so we have to work with people who are scientists with public interest philosophy and mentality to work with us, so that’s how we get to believing one thing as opposed to another. And we do our own reading, looking for inconsistencies, you know O’Conner himself he got caught in it, he said one thing at the hearing and his website which has his name on it, he’s the president, said another thing, and they asked him about it at the hearing, and he got all flustered and he said “oh well I’m not responsible for that website” well of course everyone is thinking “you’re the head of bio and somehow you don’t know this, there’s something there you don’t agree with, and it’s a major thing, how can that happen?” So those kinds of things we try to catch, you could call research, the inconsistencies among our opponents.  

Number of Individuals Involved in Advocacy (Code for Organizational Advocates Only)
[She noted this information was on her organization’s website]

Units in Organization Involved in Public Affairs/Policy (Code for Organizational Advocates Only)
[She noted this information was on her organization’s website]

Advocate’s Outstanding Skills/Assets (Code for Organizational Advocates Only)
[She is a fairly well known figure in the women’s movement and has been active on women’s health issues for the past few decades]

Type of Membership: None, Institutions, Individuals, Both (Code for Organizational Advocates Only)
Individuals 

Membership Size (Code for Organizational Advocates Only)

Organizational Age (Code for Organizational Advocates Only)

Miscellaneous