Remarks by Francine Coeytaux

Remarks by Francine Coeytaux

Final reflections

So what is our way forward? Because I am an activist, I have focused, over the course of the last three days, on trying to break down the big picture challenges to identify the pieces we can use to make change. The issues we are tackling are huge, both in their complexity and their importance and it is easy to get overwhelmed. But we cannot become paralyzed by the complications. A large part of successful organizing is identifying something that is doable. And I am convinced that many of the initiatives that we have discussed are doable.

Let's begin by looking at the numerous examples of movements or communities that have successfully tackled problems created by technologies or scientific progress.

First, and most obvious, is the Environmental Movement:

Not surprisingly, many of you, including Rich, Marcy, and Alexander - come from the environmental movement. You, best of all, recognize how many of our concerns overlap with the environmental movement. But more to the point, many of the possible strategies we can adopt going forward come from that experience.

There are many examples of successful advocacy that we can glean from the environmental movement but I just want to mention one, because of it's simplicity and impact. Many in this room are too young to remember the "don't be a litter bug" campaign. It is a prime example of how effective a simple collective effort can be. One has only to travel to Central America or parts of Africa and see the trash in the streets and rivers to appreciate the impact of this change in social consciousness.

While there is still an unfinished agenda, witness our failure to sign the Kyoto Accord, we have come a long way since the publication of Silent Spring. Thanks to the tremendous work of effective advocates, many of whom are in this room, the environmental community today :1) encompasses many diverse organizations, 2)is organized around well-defined ethical and political views; 3) addresses many issues similar to ours: biodiversity, sustainability, and social justice, to name a few; and 4) has established itself as a powerful political and lobbying force. We should aspire to the same.

The environmental justice movement provides us with even more direct examples. Let me read to you this from Wikipedia:

Root causes of environmental injustices include: "institutionalized racism; the co-modification of land, water, energy and air; unresponsive, unaccountable government policies and regulation; and lack of resources and power in affected communities".

Sound familiar? Not surprisingly some of the most impressive work on cross-movement and coalition building to promote policies on genetic technologies are being carried out by reproductive justice organizations such as Generations Ahead and SisterSong. As many have reminded us over the last few days, we already have some clear allies and there already exists numerous frameworks that we can apply to the challenges and issues we care about.

Disability Rights movement is another example we can draw from. The first and best example of the self-help advocacy movement, parents of children with disabilities organized and successfully fought for necessary technological advances and legislation – redefining and literally rebuilding our environment to meet their needs. And today, the lobbying power of such self-help advocacy groups is second to none.

The best example is the HIV/AIDS community, which has effectively addressed three of the issues we have identified as our priorities:

  • they have intervened at the level of the science – directing the research and the scientific inquiry to prioritize their needs
  • they have forced the market to address the problems of cost and lack of access to needed drugs and technologies.
  • and they have successfully educated the public about their issues, including tackling stigma

Finally, closer to home, the reproductive rights and reproductive justice communities can point to numerous successes that we can build on:

Thanks to the persistent and effective advocacy of groups like the Reproductive Health Technologies Project, the National Women's Health Project and the Boston Women's Book Collective, we now have medical abortion, emergency contraception and, soon, a microbicide, technologies and products that never would have been developed had their development been left to big Pharma or the market

And SisterSong's recent successful opposition to the Sex and Race Selection Bill introduced in the Georgia legislature is an excellent example of the power a well organized reproductive justice framework approach.

We can also learn from the adoption community whose open adoption policies should be applied to the offspring of gamete donors.

Finally, we have the numerous successes that we can claim around genetic technologies:

Many of us signed the amicus brief or were part of the legal challenge to the patenting of the Myriad genetic test. And we won!

And how many of us have provided critical testimony before legislative and other governmental bodies that have influenced policies?

We heard from Rebecca Dresser about her role in the President's Council on Bioethics

In June, Rich Hayes testified before the Congress on International Governance of human Biotechnologies.

Other examples…
Because we have in the room here today the most renown experts in our fields, I can't begin to list all of the times of venues where someone has testified in a key hearing or before a significant body. But I can comment on how important these individual contributions are.

Radhika Rao and I were reminiscing about our experience serving on the CA. Governor's Advisory Committee on Human Cloning. I will never forget the phone call, asking me to serve as the public member on this committee that was to advise the legislature on whether or not the State of CA should renew it's ban on human cloning. My response was "but I know nothing about human cloning!" Their response was – "all the better. You are there to represent the public and they know nothing about it either…" So, I joined and learned a lot, about cloning and stem cell research but also about the process. Like Rebecca, Radika and I were dismayed by the power of the organized and well-funded lobbyists. But what surprised us most was how much influence we, the two individuals, were able to have. The committee ultimately did recommend a continued ban on human reproductive cloning – but only because of our inputs.

The power of individuals to influence public policy by bird-dogging publicly funded initiatives is immeasurable. Those of us working in California to contain the publically funded stem cell institute have been able to hold the line against payment for eggs for research and effectively influence the regulations by being a critical public voice.

Finally, there is the immeasurable impact of all of your fabulous writing and research. Because we are on the cutting edge of addressing these challenges, we have the opportunity to frame the issues. Thanks to the many fabulous thinkers and writers in this room, starting with the CGS staff, we are doing just that. And, thanks to the contribution of all of you "younger generation" writers and researchers, we are beginning to effectively do what Stewart keeps calling for –use the myriad new social networking platforms and web technologies to educate the public and promote our views.

In closing, I would like to support the recommendation that has been voiced over and over again throughout this meeting – that we think and act more globally. What can be more global than "the human future"? Moreover, we need to recognize, that our actions, or in all too many cases, our inactions have a global impact. The best example of this being "reproductive tourism".

We in the US have a long ways to go before we deserve any moral leadership on these issues. We have failed, because of politics, to sign onto any of the major international treaties. And banning any technical advancement is perceived in our country as a threat to science or worse yet, a hobbling of our market economy – evidence our failure to sign the Kyoto treaty and our government's hesitancy to step in and regulate the oil industry, even in the light of egregious behavior of BP and the devastating consequences of the oil spill. How about the embarrassment of being on of a handful of countries not to have a ban against human reproductive cloning? Or our failure to regulate or oversee our $3 billion dollar a year assisted reproductive industry.

Personally, I reject the argument against regulation that I have heard made several times over the past few days. Some argue that we should not regulate or curtail medical practices such as ARTs because it will only force people to go elsewhere to seek the services. This argument was made by people on the human cloning committee as well – If we ban it in CA, people will just go to Oregon or Nevada. But I argue on the contrary. That it is precisely because we are the drivers of the science and because we have the biggest and most powerful market, that we need to show responsible stewardship by enacting effective policies and regulations.

So, I urge us all to move forward and begin to focus our efforts on a few collective initiatives which will give us a couple of concrete political wins and that can magnify the individual efforts already underway. My hope is that in 10 years time, we will look back at this Tarrytown Meeting and identify it as the birth of a successful and powerful movement that encompasses many diverse organizations, unified around a couple of well-defined ethical and political views.

Thank you, CGS.

Now Charlie, Pat and I have a joint statement we would like to make…..

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Final reflections by Francine Coeytaux at the Tarrytown Meeting, July 29, 2010

So what is our way forward? Because I am an activist, I have focused, over the course of the last three days, on trying to break down the big picture challenges to identify the pieces we can use to make change. The issues we are tackling are huge, both in their complexity and their importance and it is easy to get overwhelmed. But we cannot become paralyzed by the complications. A large part of successful organizing is identifying something that is doable. And I am convinced that many of the initiatives that we have discussed are doable.

Let's begin by looking at the numerous examples of movements or communities that have successfully tackled problems created by technologies or scientific progress.

First, and most obvious, is the Environmental Movement:

Not surprisingly, many of you, including Rich, Marcy, and Alexander - come from the environmental movement. You, best of all, recognize how many of our concerns overlap with the environmental movement. But more to the point, many of the possible strategies we can adopt going forward come from that experience.

There are many examples of successful advocacy that we can glean from the environmental movement but I just want to mention one, because of it's simplicity and impact. Many in this room are too young to remember the "don't be a litter bug" campaign. It is a prime example of how effective a simple collective effort can be. One has only to travel to Central America or parts of Africa and see the trash in the streets and rivers to appreciate the impact of this change in social consciousness.

While there is still an unfinished agenda, witness our failure to sign the Kyoto Accord, we have come a long way since the publication of Silent Spring. Thanks to the tremendous work of effective advocates, many of whom are in this room, the environmental community today :1) encompasses many diverse organizations, 2)is organized around well-defined ethical and political views; 3) addresses many issues similar to ours: biodiversity, sustainability, and social justice, to name a few; and 4) has established itself as a powerful political and lobbying force. We should aspire to the same.

The environmental justice movement provides us with even more direct examples. Let me read to you this from Wikipedia:

Root causes of environmental injustices include: "institutionalized racism; the co-modification of land, water, energy and air; unresponsive, unaccountable government policies and regulation; and lack of resources and power in affected communities".

Sound familiar? Not surprisingly some of the most impressive work on cross-movement and coalition building to promote policies on genetic technologies are being carried out by reproductive justice organizations such as Generations Ahead and SisterSong. As many have reminded us over the last few days, we already have some clear allies and there already exists numerous frameworks that we can apply to the challenges and issues we care about.

Disability Rights movement is another example we can draw from. The first and best example of the self-help advocacy movement, parents of children with disabilities organized and successfully fought for necessary technological advances and legislation – redefining and literally rebuilding our environment to meet their needs. And today, the lobbying power of such self-help advocacy groups is second to none.

The best example is the HIV/AIDS community, which has effectively addressed three of the issues we have identified as our priorities:

they have intervened at the level of the science – directing the research and the scientific inquiry to prioritize their needs

they have forced the market to address the problems of cost and lack of access to needed drugs and technologies.

And they have successfully educated the public about their issues, including tackling stigma

Finally, closer to home, the reproductive rights and reproductive justice communities can point to numerous successes that we can build on:

Thanks to the persistent and effective advocacy of groups like the Reproductive Health Technologies Project, the National Women's Health Project and the Boston Women's Book Collective, we now have medical abortion, emergency contraception and, soon, a microbicide, technologies and products that never would have been developed had their development been left to big Pharma or the market

And SisterSong's recent successful opposition to the Sex and Race Selection Bill introduced in the Georgia legislature is an excellent example of the power a well organized reproductive justice framework approach.

We can also learn from the adoption community whose open adoption policies should be applied to the offspring of gamete donors.

Finally, we have the numerous successes that we can claim around genetic technologies:

Many of us signed the amicus brief or were part of the legal challenge to the patenting of the Myriad genetic test. And we won!

And how many of us have provided critical testimony before legislative and other governmental bodies that have influenced policies?

We heard from Rebecca Dresser about her role in the President's Council on Bioethics

In June, Rich Hayes testified before the Congress on International Governance of human Biotechnologies.

Other examples….

Because we have in the room here today the most renown experts in our fields, I can't begin to list all of the times of venues where someone has testified in a key hearing or before a significant body. But I can comment on how important these individual contributions are.

Radhika Rao and I were reminiscing about our experience serving on the CA. Governor's Advisory Committee on Human Cloning. I will never forget the phone call, asking me to serve as the public member on this committee that was to advise the legislature on whether or not the State of CA should renew it's ban on human cloning. My response was "but I know nothing about human cloning!" Their response was – "all the better. You are there to represent the public and they know nothing about it either…" So, I joined and learned a lot, about cloning and stem cell research but also about the process. Like Rebecca, Radika and I were dismayed by the power of the organized and well-funded lobbyists. But what surprised us most was how much influence we, the two individuals, were able to have. The committee ultimately did recommend a continued ban on human reproductive cloning – but only because of our inputs.

The power of individuals to influence public policy by bird-dogging publicly funded initiatives is immeasurable. Those of us working in California to contain the publically funded stem cell institute have been able to hold the line against payment for eggs for research and effectively influence the regulations by being a critical public voice.

Finally, there is the immeasurable impact of all of your fabulous writing and research. Because we are on the cutting edge of addressing these challenges, we have the opportunity to frame the issues. Thanks to the many fabulous thinkers and writers in this room, starting with the CGS staff, we are doing just that. And, thanks to the contribution of all of you "younger generation" writers and researchers, we are beginning to effectively do what Stewart keeps calling for –use the myriad new social networking platforms and web technologies to educate the public and promote our views.

In closing, I would like to support the recommendation that has been voiced over and over again throughout this meeting – that we think and act more globally. What can be more global than "the human future"? Moreover, we need to recognize, that our actions, or in all too many cases, our inactions have a global impact. The best example of this being "reproductive tourism".

We in the US have a long ways to go before we deserve any moral leadership on these issues. We have failed, because of politics, to sign onto any of the major international treaties. And banning any technical advancement is perceived in our country as a threat to science or worse yet, a hobbling of our market economy – evidence our failure to sign the Kyoto treaty and our government's hesitancy to step in and regulate the oil industry, even in the light of egregious behavior of BP and the devastating consequences of the oil spill. How about the embarrassment of being on of a handful of countries not to have a ban against human reproductive cloning? Or our failure to regulate or oversee our $3 billion dollar a year assisted reproductive industry.

Personally, I reject the argument against regulation that I have heard made several times over the past few days. Some argue that we should not regulate or curtail medical practices such as ARTs because it will only force people to go elsewhere to seek the services. This argument was made by people on the human cloning committee as well – If we ban it in CA, people will just go to Oregon or Nevada. But I argue on the contrary. That it is precisely because we are the drivers of the science and because we have the biggest and most powerful market, that we need to show responsible stewardship by enacting effective policies and regulations.

So, I urge us all to move forward and begin to focus our efforts on a few collective initiatives which will give us a couple of concrete political wins and that can magnify the individual efforts already underway. My hope is that in 10 years time, we will look back at this Tarrytown Meeting and identify it as the birth of a successful and powerful movement that encompasses many diverse organizations, unified around a couple of well-defined ethical and political views.

Thank you, CGS Charlie, Pat and I have a joint statement we would like to make…..