Bernard Siegel is the full-time Executive Director of the nonprofit Genetics Policy Institute (GPI) based in Palm Beach Gardens, Florida. In 2002, Mr. Siegel filed the landmark case seeking a guardian for the alleged clone, “Baby Eve.” The case was widely credited for exposing Clonaid, the so-called “human cloning company” as a sham. In 2003, he traded his 30-year courtroom career to found GPI, which leads the global cause in support of stem cell research. He is a recognized policy expert relating to stem cell research, regenerative medicine and cloning. He also works with grassroots activists throughout the United States, educating lawmakers and formulating effective strategies supporting research for cures.
The following transcript of Daniel Perry’s presentation at the free symposium entitled Aging: The Disease, The Cure, The Implications has not been approved by the speaker. Video is also available.
Advancing Stem Cell Research
I was an attorney in Miami, Florida at the end of 2002. Watching television, I saw CNN break in live. That was Dr. Boisselier of the so-called human cloning company Clonaid, part of the Raellian UFO sect. I don’t know if there are any followers of Rael here, if you would raise your hand? I was watching this and the world seemed to come apart. The zeitgeist at the time was that reproductive cloning was just around the corner. Dolly the sheep was in 1997, there had been articles in Wired talking about IVF doctors playing with cells in their back room, and that this was something that we had to fear.
As I watched this, I remembered that I had helped my daughter with a paper on Dolly the sheep in junior high school, and I knew that you could not clone a person safely. It was not a safe thing to do, it was not ethical, and as I observed the world coming unglued as to whether this happened, I said to myself, “You know, I could do something about this.” Anyone who is aware of a child who is potentially neglected or endangered in some way could file a petition with the court, and I was right in Miami, so I drove up on December 31st, 2002 with a petition I had typed up, seeking a temporary guardian for the alleged cloned child, thinking to myself that perhaps this would be a footnote in some law journal.
That night I went home, turned on CNN, my wife and I were not going out until later. Across the bottom of the ticker it said “Florida attorney Bernard Siegel seeks custody of cloned baby.” My wife turned to me and said, “Bernie, what did you do?” This was the case that Connie Chung described as the most unusual case in human history. A couple nights later I got a call from a reporter saying, “Mr. Siegel, do you have a comment? Rael has said they are not going to do the DNA testing because you are trying to take the baby away from the mother.”
Two nights after that, I was debating Rael on Connie Chung Live. There, Connie Chung asked the most unusual question ever asked on television. She said, “Your holiness, how is the world to think that you are anything but a megalomaniac, having sex with your followers and doing this for publicity?” And he says in a French accent, “You wouldn’t talk this way to the Catholic Pope,” and I’m looking at the monitor thinking to myself five days ago I was an ordinary attorney, now I’m debating a deity on world television.
It turned into a serious matter. It became a real case and a big media cause célèbre. In thirty days we were able to put a pin in this, and found out that Clonaid lacked a street address, lacked a board of directors, and was nothing more than a sham. Even though Brigitte Boisselier went to court and said there was a cloned baby, it was born in Israel and had never been in Florida, and therefore no jurisdiction, it was widely recognized that this was just a publicity stunt.
I was so amazed as I did the research and was faced by searing media scrutiny as to why I intervened in this. As a cancer survivor myself, it was very significant to me that this group had testified in congress, appeared before the national academy of sciences and were impacting the public perception about stem cell research — stem cell research being one of the core technologies for anti-aging. As I delved into it, who was foisting these people on the public and why were they taking it seriously? Two prominent scientists, Rudolph Jaenisch at MIT and Ian Wilmut, the father of Dolly the sheep, reached out to me and said, “You were the only person to stand up against these cartoon scientists. Thank you for doing that. If you will create an organization to advance the cause of scientific research and perhaps be a legal mouthpiece for this, we will introduce you to the scientific community.”
If you go to Fox News, CNN or MSNBC, in a minute you might have a legitimate scientist and a charlatan. How is the public to understand, with our tenth grade biology educations, who is telling the truth and who is not? When on August 1st, 2001, President Bush gave his first speech to the American public, it was on the subject of stem cell research. Of course, he placed an arbitrary line in the sand. He created limited funding for embryonic stem cell research, only for those stem cell lines that had been created before that date in time. That is about 22 stem cell lines, which frankly are not enough. Indeed, since that announcement approximately $160 million of federal funds from NIH have gone into research on these federally funded embryonic stem cell lines. How significant is that? $160 million, what is that, a half hour in Iraq? It is a drop in the bucket compared with the $28 billion NIH budget. Indeed, Irv Weissman, the preeminent stem cell scientist at Stanford, has said that the NIH is perhaps the greatest engine of scientific advancement in the history of man, and we find that the NIH is basically on the sidelines of this incredible field of regenerative medicine.
I was very concerned with who is trying to limit this. Of course, you need to know that the same sources that have limited funding for this field are still active today. Much of this in this country comes from the religious right, of course. Roe v. Wade decided in the 1970’s based on a woman’s right to privacy, deciding first trimester abortions are allowed. The forces against that have been roiling up in American politics for years.
The funding for this fight against embryonic stem cell research can be found in the funding for social conservative think tanks. Approximately $162 million a year, according to a study by the Women’s Bioethics Project, is poured into enterprises like the American Enterprise Institute, the Discovery Institute, Dr. Dobson’s Focus on the Family, and the Family Research Council. These organizations have a bioethics agenda as part of their platform. They spin out the message box that is going against this research, a message box that might say we don’t need embryonic stem cell research because adult stem cell research works.
In the years that I have been doing this, and I gave up the practice of law to do this, it has been a challenge to debate many of these foes of stem cell research at different platforms. I remember debating Dr. David Prentice of the Family Research Council. He throws up a slide of a football scoreboard, and it would say “Adult Stem Cell Research: 72, Embryonic Stem Cell Research: 00.” They are trying to say that there are seventy-two cures coming from adult stem cell research, and that embryonic stem cell research is nothing more than junk science. Well, that is ridiculous, of course. Since Jaime Thompson’s incredible experiment in 1998, we have only begun our research in this breathtaking area. Of course, we are still a distance from clinical trials, but we are actually talking with the FDA now about clinical trials.
To try to say that there has been no progress in this field ignores the scientific method and all the work that has been done successfully with animal models. They will foist ideas like there are snowflake babies, as if there are thousands and thousands of people ready to adopt frozen embryos that are going to be discarded. Maybe there have been eighty cases of that, and there are 400,000 frozen embryos, many of which can be donated to science. This is a resource that is necessary if we are going to advance this research.
These forces like to wield the term “human dignity” in a coercive way. Who are these forces? These are the same folks, historically, that thrust Galileo into the Inquisition, they burnt Bruno at the stake, they fought inoculation, surgery and anatomy. These are the same social forces that are out there today, trying to keep this in the bottle. They are worried about the societal implications of biotechnology. Indeed, if you look at our culture and you talk about the zeitgeist, look at the movies like “I am Legend,” or any number of movies, there is this fear of biotechnology. The forces that are trying to hold this back are tapping into this fear all the time.
In my view, society has a way of dealing with these fears. There will be a time when aging is defeated. There are going to be a lot of legal ramifications to that. What are you going to do with sentencing when someone commits a crime if they could live for 150 years or more? There will be a new meaning for permanent alimony, won’t there?
The law works in incremental ways. While there is a debate over embryos and where life begins, foes of research will look at cells in a Petri dish and see them as people. The law has to deal with issues like this all the time. Right now there are cases in the United States where they are fighting over custody of frozen embryos in a dish. When they are fighting over this, they are not thinking of the best interest of the embryo. The best interest of the child is the test. In every case they look at these cells as personal property. Society has a way of dealing with these issues, and certainly it will if we are able to advance the human lifespan.
I want to share with you a couple of other things. You hear the issue of cloning coming up. There is reproductive cloning of a baby, and everyone basically is opposed to that. They can see that as being an unsafe practice. However, there is also therapeutic cloning of cells, or nuclear transfer. The foes of stem cell research have gone so overboard that they have actually built the movement that is fighting these advancements in a big way.
You look at Senator Sam Brownback, the conservative senator from Kansas, and we call it the Brownback Bill. This bill would incarcerate a scientist for ten years if he engaged in therapeutic cloning, a form of stem cell research. Indeed, if a patient went overseas and took some therapy, upon reentry into the United States that patient would go to jail for ten years or face a million dollar fine. It is even more stringent in Michigan. These fights are going on state by state all over the country. There is an initiative in Colorado to define personhood at conception. Could you imagine the chaos that would ensue if that passes? Every year, in every state legislature, bills are dreamed up to put roadblocks in the way of where we have to go to advance this.
Even in the United Nations, where my organization had its first success, there was a gambit backed by the Bush Administration to enact a world treaty to ban therapeutic cloning. We were the whistleblowers in that situation and we organized 35,000 FAX letters to the UN. We made a tremendous outcry, joined by scientists and the Coalition for the Advancement of Medical Research then led by Dan Perry. We actually went into the United Nations and fought this issue, and eventually derailed that treaty, at first by a single vote.
The foes of freedom of scientific research are going to be with us for a long, long time. That is not going to disappear. We, as an informed citizenry, know that there have to be boundaries on science. There is a place to put our fences, but let’s put those fences in a place to alleviate human suffering and to advance the human lifespan.
I want to share one final thought with you. The proponents of life extension and folks that want to cure aging, it cannot be a narcissistic project. This has to be, at its core, an effort to alleviate human suffering. What is the pro-cures movement? It is not a political movement. It is akin to a consumer movement. If you ask a man or woman in the street right now if they support stem cell research, 70% will say that they do. Well, it is not because they see it as some giant public health issue–they see it as a personal health issue, an issue impacting their lives. That is the force that passed Prop 71, which was not a waste at all. Right now, under the current policies, I could not use a pipette from NIH funding on a non-approved stem cell line or my entire institution could lose funding. That is how outrageous the state of the law is right now.
When the Brownbacks of the world want to throw scientists in jail, that enraged certain people that had children with diabetes. Movie producers and mortgage brokers got together and created Prop 71. California leads the way with $300 billion for this research. When you compare that with the paltry amount that has come from the federal government, it is absolutely extraordinary. That is why in California and Missouri, the bellwether state, stem cell research is written in as a fundamental right in the state constitution. That is what the pro-cures movement is. If the field of anti-aging is really going to advance, if, as Greg says, we are really going to make this a Manhattan Project, that movement has to align itself and realize that we are all stakeholders in fighting for these core technologies. Thank you.