Rival teams of scientists have completed the first rough map of the human genetic code after a fierce 10-year race that cost millions of dollars. [includes rush transcript]
The publicly funded Human Genome Project and the private Celera Genomics Corp. each held press conferences Monday to announce they have decoded the 3.1 billion sub-units of DNA, the chemical "letters" that make up the recipe of human life.
The discovery is described as one of history’s great scientific milestones, the biological equivalent of the moon landing.
Specific sequences of DNA characters form the genes that make us what we are, govern our biological functions and determine our susceptibility to illnesses. DNA mapping promises to herald a new era of genetic-based medicine. Scientists say it will enable doctors to treat the underlying genetic causes of hundreds of human disorders, including heart disease and cancer.
However, this new scientific breakthrough raises a number of safety and ethical issues. Critics are concerned that this new knowledge of genetics will be used to build "designer people" or change patterns of heredity. There are issues of privacy and confidentiality of genetic records; discrimination based on one’s genetic makeup, and emphasis on genetic causes of disease that may be triggered, without looking at the environmental triggers. And we’ll be speaking with a Native American rights activist about the patenting of the gene line of various indigenous peoples because of unusual immunities. These are some of the issues we are taking a look at today.
- Robin Marantz Henig, author of ??The Monk in the Garden: The Lost and Found Genius of Gregor Mendel, the Father of Genetics. She is the author of six books, including ??A Dancing Matrix: How Science Confront Emerging Viruses.
- Dorothy Nelkin, professor of sociology at New York University. She is the co-author with Laurence Tancredi of ??Dangerous Diagnostics: The Social Power of Biological Information. She also wrote ??The DNA Mystique, and the forthcoming book ??Body Bazaar.
- Marya Norman-Bloodsaw, one of several plaintiffs in a lawsuit filed against Lawrence Berkeley Laboratory, which is operated by the University of California. According to the suit, the laboratory tested the blood samples of employees, without consent, for highly intimate medical conditions and genetic traits. These included sickle cell anemia, pregnancy and syphilis. This practice had been followed for two decades, with employees of color commonly targeted. Lawrence Berkeley Laboratory, it should be noted, was one of the original facilities involved in the mapping of DNA.
- Ruth Hubbard, professor emeritus of biology at Harvard University. She is the author of ??Exploding the Gene Myth (with son Elihah Wald, Beacon Press) and ??Profitable Promises (Common Courage).
- Dr. Ari Patrinos, Director, Office of Biological and Environmental Research at the Department of Energy. He is the head of the DOE’s Human Genome Project.
- Deborah Harry, a Northern Paieut. She is with the Indigenous Peoples Council On Biocolonialism. She believes that genetic research hurts indigenous peoples by diverting public funds away from direct health care and prevention programs. She is also concerned that it could lead to patents on the genetic inheritance of indigenous peoples.
- Jose Morales, Director of Public Interest Biotechnology. He focuses on risk assessment, and how genetic information can be used to help communities of color. He worked with El Puente, co-founded Toxic Avengers, and the New York City Environmental Justice Alliance.
AMY GOODMAN: We’re going to spend the day today talking about the human genetic code. Rival teams of scientists have completed the first rough map of the human genome after a fierce ten-year race that cost millions of dollars. The publicly funded Human Genome Project and the private Celera Genomics Corporation each held press conferences this week to announce they decoded the 3.1 billion sub-units of DNA, the chemical letters that make up the recipe of human life.
The discovery is described as one of history’s great scientific milestones, the biological equivalent of the moon landing. Specific sequences of DNA characters form the genes that make us what we are, or some of what we are, govern our biological functions and determine some of our susceptibility to illnesses. DNA mapping promises to herald a new era of genetic-based medicine. Scientists say it will enable doctors to treat the underlying genetic causes of hundreds of human disorders, including heart disease and cancer.
However, this new scientific breakthrough raises a number of safety and ethical concerns. Critics are concerned that this new knowledge of genetics will be used to build designer people or change patterns of heredity. There are issues of privacy and confidentiality of genetic records, discrimination based on one’s genetic makeup, emphasis on genetic causes of disease that may be triggered, without looking at the environmental triggers. And we’ll be speaking with a Native American rights activist about the patenting of the gene line of various indigenous peoples, because of unusual immunities they might have.
So that’s all coming up on the show. But we’re going to first go back and look at the founder of genetics, Gregor Mendel, and his experiments on pea plants. We’re joined by Robin Marantz Henig, who is author of The Monk in the Garden: The Lost and Found Genius of Gregor Mendel, the Father of Genetics. Welcome to Democracy Now!, Robin Marantz Henig.
ROBIN MARANTZ HENIG: Good morning, Amy. Thank you.
AMY GOODMAN: So tell us where this all began.
ROBIN MARANTZ HENIG: Well, it began at a point in our intellectual history where people really had no idea where inherited traits came from. This was in the mid-nineteenth century, when people thought one of two things: either that we were all born with preformed future generations in our gametes, sort of like little Russian nesting dolls, one inside the other inside the other, so that there was no new contribution to a creature’s inheritance. And the other way we thought was that maybe a male and a female did equally contribute to their offspring, but things were blended together so that the offspring were sort of this halfway point between the two of them.
Gregor Mendel, who was a monk in Moravia, wasn’t sure that either of these approaches was right. And so, he wanted to prove that things were inherited according to units, that different units came from each parent and that they were recombined in a random and sort of meaningless way.
JUAN GONZALEZ: And so, what — how did he begin to do his own experimentation?
ROBIN MARANTZ HENIG: Well, he began with pea plants, as Amy said. This was something that was done a lot in the 1850s, when he began his experiments, a process called hybridization, where the scientists sort of crossbred the pollen from one plant and the female portion from the other plant and could make hybrids. But what Mendel did differently was he made these hybrids, and then he crossed them with each other so that he got a subsequent generation, a grandchild generation, if you will. And he watched individual traits and watched how they were passed from one generation to the next. All previous hybridizers had basically looked at the plant in general, so that if they started with crossing a tall plant and a dwarf plant, they decided that they were getting plants that were sort of midway between them, as well as plants that sort of had, you know, sort of mixed colors of flowers. And they just got a general impression of things. Mendel was much more precise about his experimentation.
He looked at seven traits. He counted the number of offspring that had each of those traits, and these were all traits that existed in an either/or formulation. The pea was either yellow or green. The plant was either tall or dwarf. The flower was either white or purple. And he then looked at the numbers that he had accumulated and found mathematical correlations between them, came up with this ratio of what we now know is 3:1 dominant traits to recessive traits in the offspring of the hybrids and went back to think about how that could have happened. That’s when he came up with his theory of inheritable units. He didn’t know what they were. They didn’t have the name gene at that time. But that was what set us up for understanding our current notion of genes.
AMY GOODMAN: We only have a few more minutes for this history portion, but why was it that his investigation was not appreciated for many, many years?
ROBIN MARANTZ HENIG: I think nobody really got what he was trying to say. Mendel gave a talk in 1866 in which he explained eight years of experimentation with peas and came up with his theories about inheritable units. And he was met by a resounding silence. You know, the people in the audience didn’t respond to it. He sent out his reprints of his article to prominent scientists of the day, including Charles Darwin, who was thinking about evolution. Nobody responded to it, except one guy who really didn’t understand it. And Mendel then died a forgotten man.
In fact, he did try to replicate his experiments with one strain of plants in which they didn’t work. It didn’t work at all in this new strain of plants. So Mendel thought he was wrong, and he stopped pursing it also. And for thirty-five years his paper just languished in obscurity, until in 1900 it was rediscovered in this flash of inspiration by three different scientists in three different countries. And the reason that they were able to understand it retrospectively is that we had accumulated a lot more knowledge about how the cell works and, you know, that there was a nucleus and that there were chromosomes.
AMY GOODMAN: Who coined the word "gene"?
ROBIN MARANTZ HENIG: This was — it was coined by William Bateson, who was a British zoologist, who was one of the people to rediscover Mendel in 1900. He came up — well, he came up with the word "genetics" in 1905. The word "gene" itself, just as the specific unit, was coined by a man named Wilhelm Johannsen, a Danish scientist, in 1909. And these words were really important at the time. They were sort of the culmination of a whole lot of other words that had been tried and failed. "Gene" is the one that stuck.
JUAN GONZALEZ: In terms of the leaps then that were made to the current situation of the Genome Project, what were the main steps along that process?
ROBIN MARANTZ HENIG: Well, it’s been a long time since then. This was a hundred years ago that Mendel’s paper was rediscovered. But was has happened since then, I guess — what happened since then is basically everything we know about genetics. You know, we came to understand that genes existed along a chromosome. That happened in the ’20s. And then we came to understand that DNA was a particular kind of a chemical molecule. That happened in the ’40s.
And then, in 1953 was the big discovery by Watson and Crick of how DNA was structured in this kind of spiral staircase called the double helix. Knowing that gave us information about what was on those slats in between in the spiral staircase. Those were the bases, the nucleotide bases, that are the letters that we talk about now when we’re talking about the genome. So, in 1953, we knew that there were letters, we knew that their order was important, but it wasn’t until now that we have actually come up with the order of all three-plus billion of them.
AMY GOODMAN: Robin Marantz Henig is author of The Monk in the Garden: The Lost and Found Genius of Gregor Mendel, the Father of Genetics. We’re also joined on the phone by Dorothy Nelkin, professor of Sociology at New York University, who’s written a few books. She co-authored Dangerous Diagnostics: The Social Power of Biological Information and also wrote The DNA Mystique and has a forthcoming book called Body Bazaar.
What are your concerns about the discovery, at least the announcement this week, of the cracking of the human gene, the sequencing of it?
DR. DOROTHY NELKIN: Well, clearly it’s an important scientific development, and I don’t want to underplay this. I was struck by the hyperbole. First of all, it’s 90% sequenced, not 100%. But that tells you that in the long run, I suppose, is going to be helpful in terms of understanding the body. However, it doesn’t say much about the function of genes.
Also, I was very struck in the announcements that in every talk, in every op-ed, the key point was the effort to make sure that there would be a great deal more money put into the program. One had the impression in reading the speeches that this was really, in a way, a campaign for congressional funds and for private venture capital.
AMY GOODMAN: Professor Nelkin and Robin Marantz Henig, we have to break for stations to identify themselves. We’re going to talk about the implications of pouring that money into genetic research and also the concerns people have. For example, the more we know about our genes, well, what will corporations do about this? What about gene patenting? What about genetic discrimination? We’ll be talking to a woman who knows this story well. She was tested when she went to work at the UC Berkley Lab, Lawrence Laboratory, and she didn’t even know she was being tested. You’re listening to Pacifica Radio’s Democracy Now! Be back in a minute.
AMY GOODMAN: You’re listening to Pacifica Radio’s Democracy Now!, the Exception to the Rulers. I’m Amy Goodman. Our guests: Professor Dorothy Nelkin, author of a number of books on DNA, her forthcoming book, Body Bazaar, as well as Robin Marantz Henig, author of The Monk in the Garden: The Lost and Found Genius of Gregor Mendel, the Father of Genetics.
JUAN GONZALEZ: Well I’d like to ask Robin Marantz Henig, what about this issue of the corporate versus public role in this? Clearly, we had a race here between a private corporation and a project, basically a government-sponsored project, to decode the string of genes in the Human Genome Project. Now, what about this issue of corporations being able to patent particular strings in the gene chain?
ROBIN MARANTZ HENIG: I get very worried when corporations try to patent strings of base sequences that they don’t know anything about. You know, they — what certain corporations are doing is just kind of staking a claim to any kind of sequence, not really knowing what the gene does, sometimes not even knowing whether it’s a gene at all or just a bunch of letters in a row. And that worries me a lot, because then when somebody does figure out what that gene is, he won’t be able to use it in a way that will be beneficial to us.
I’d like to backtrack a little bit and talk about the fact that there was this race between the government project and the privately funded project. The existence of the privately funded project actually speeded things up. You know, the fact that it was a race at all made the genome sequencing happen probably five years before it was destined to. So even though it’s a little bit troubling to have there be a profit motive here in this quest for scientific knowledge, what the result was was that the scientific knowledge was accumulated much faster.
AMY GOODMAN: Dorothy Nelkin, the gene patenting, though, these are not inventions, these are human genes.
DR. DOROTHY NELKIN: Yep.
AMY GOODMAN: How did they get to be patented?
DR. DOROTHY NELKIN: Well, there is sort of a history of this in terms of whether a patent can —- undergoes any kind of process, and the US Patent Office has been very liberal in defining what is a process that changes from a natural entity -—
AMY GOODMAN: Some say made a terrible mistake.
DR. DOROTHY NELKIN: But at this point —
AMY GOODMAN: Some say made a terrible mistake by doing this.
DR. DOROTHY NELKIN: Some say it’s a terrible thing. Others say it’s the only way to get venture capital into — that patenting is the only way that people are going to put money into this field. So there’s a great deal of difference of opinion as to whether this was a mistake or not.
At this point, I believe the patent office is now pulling back in its liberal policies about granting patents, because there have been too many and, as Robin said, on genes where there’s no understanding of the function, and that function can later end up to be very important, and yet the stake is claimed, and others cannot do research on it without paying royalty fees.
AMY GOODMAN: Well, speaking of corporate control of information, not only gene patenting, but also the issue of genetic discrimination once corporations, insurance companies, etc., find out what your gene sequence might be or whether you have a certain propensity for something expressed in a gene, they could deny you information. And the question is what public policy will come out of this.
We’re joined on the phone right now by someone who does know, from California, what this is all about. Marya Norman-Bloodsaw is with us, one of several plaintiffs in a lawsuit filed against Lawrence Berkeley Laboratory, which is operated by the University of California.
Can you tell us, Marya Norman-Bloodsaw, what happened to you when you went to work for Lawrence Lab?
MARYA NORMAN-BLOODSAW: The policy at Lawrence Lab at the time I went to work for them was that all employees had to submit to a pre-employment physical. The physical came sometime after employment. In my case, I was employed there for about six weeks before I did the physical. During the course of the physical, they drew blood and there was a urine sample taken, and you weren’t told exactly what you were being tested for. And so, everyone assumed it was just a normal panel of tests that you would normally do for cholesterol, that type of thing. But what had happened was all African Americans were tested for sickle cell anemia, which is a genetic test. All women were tested for pregnancy. And from what we’ve seen so far of the data that’s been submitted, all minorities were tested for syphilis.
JUAN GONZALEZ: How long after did you find out that these were some of the tests that were performed on the employees?
MARYA NORMAN-BLOODSAW: In my case, I found out years later. There is one employee who is a plaintiff in the lawsuit that the tests were done repeatedly on her for over a period of twenty years. She was tested something like twenty times for sickle cell.
JUAN GONZALEZ: And did they ever discover any diseases where they never even notified the employees that they had tested positive?
MARYA NORMAN-BLOODSAW: One of the plaintiffs in the case did test positive for the sickle cell gene, and he was never notified.
AMY GOODMAN: And how did they use the information? So they have all this information, they don’t tell you what they find, you don’t know that they’re even gathering it. What do they do with it?
MARYA NORMAN-BLOODSAW: We have no idea what they’ve done with it. We’ve asked repeatedly for information as to who had access to the information, what was the information used for, where’s the information being stored, and we have never gotten answers.
AMY GOODMAN: How did you find out they tested you?
MARYA NORMAN-BLOODSAW: I found out actually accidentally. I was in an automobile accident, and the automobile accident was on the grounds of the laboratory. So I needed to get all my medical records, and during the course of that, I asked to show them to my mother, who was a retired nurse, and she pointed out to me what I had been tested for.
JUAN GONZALEZ: Well, it’s interesting that you mention that, because in today’s New York Times, one of the top places that have patented genes is listed as the University of California, which has already patented forty-six genes in the — well, requested patents with the US Patent Office.
One of the other interesting things in this article in the Times today talks about a firm by the name of Human Genome Sciences based in Rockville, Maryland, which was granted a patent on a gene for a protein that turned out to serve as the entryway for the AIDS virus to infect cells. And the company is now maintaining that any AIDS treatments that utilize the information that they gathered, that they have now patented, would require paying them royalties.
Is this symptomatic of some of the problems that may be arising increasingly in the future, that perhaps actual research on certain medical cures might be restricted or might turn out not to be viable because people might be afraid of having to pay royalties to others who already have patents? I’d like to ask that to Dorothy Nelkin.
DR. DOROTHY NELKIN: Well, clearly that’s one of the problems, but there are other problems, as well, for science. If patents are pending, people tend to be rather secret about their research, and openness in scientific work becomes very important. There are a lot of stories at this point within the scientific community about people being secret, not just because they might get a Nobel Prize someday, but because there’s money involved.
Another kind of issue is that the commercial, the potential for patents, but also the commercial support is suspected of leading to hasty decisions, as in the case of the gene therapy case at the University of Pennsylvania, where the concern was that gene therapy trials were proceeding too rapidly without due consideration of ethical issues, because of the rush to be first in these areas.
AMY GOODMAN: We’re also joined on the telephone now by Professor Ruth Hubbard, she’s Professor Emeritus of biology at Harvard University, author of a number of books, including Exploding the Gene Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators and Law Enforcers. Ruth Hubbard, continue in this line of thought of your concerns about where we go from here. The genetic information is decoded, and now who moves in to exploit this?
DR. RUTH HUBBARD: Well, you know, one of the things that — or perhaps the main thing that worries me, in addition to all the things the other people have mentioned, is the enormous exaggeration of the importance of genetic foreknowledge, this genetic determinism, the thought that’s being pushed in the media, as well as in the announcements yesterday, that leads people to think that we are the product of our genes; we are the read-outs of our genes; once we know about our genes, we’ll know everything that we need to know about us; we’ll be able to foretell health, disease and personality, intelligence; the whole string that was listed off yesterday, which is simply not true, but which engenders a kind of, not just genetic determinism, but genetic fatalism, the thought that we should really know all this, because of all the important things it will tell us.
And one of the things that worries me very much about that is that there is a huge amount of money to be made from making people believe that, so that this is a concerted effort of partly a business effort to get people to believe that they owe it to themselves and to their families, and so on, to have themselves tested in all this myriad ways which, in fact, tells us very little about ourselves.
JUAN GONZALEZ: We’re also joined on the phone by Dr. Ari Patrinos, who’s the director of the Office of Biological and Environmental Research at the Department of Energy. He’s the head of the DOE’s Human Genome Project. And, Dr. Patrinos, we’ve been talking with several people here about some of the pitfalls and problems that they envision arising from the announcement this week and that the mapping of the human gene sequence is 90% completed.
Do you see any cause for concern, in terms of some of these issues, such as the pushing of a sense of genetic determinism in the population and the rush to patent strings within the sequence? Could you talk in terms of how the government views the announcement this week?
DR. ARI PATRINOS: I will do my best. And good morning and thank you for having me on your program, first. I did catch the tail end of the comments that the last speaker was making and I couldn’t agree more in terms of the dangers that are inherent in this wonderful discovery and this wonderful accomplishment that we celebrated a couple of days ago. And I couldn’t agree more with the position that we should avoid and fight this genetic determinism as much as possible.
And we need to emphasize, as often as we can and as effectively and convincingly as we can, that the environmental factor in all aspects in the onset and progress of human disease, for example, is just as important and perhaps very often even more important than the genetic predisposition to the disease. This is one aspect that sometimes gets lost in the hype and hoopla associated with what is, of course, a wonderful accomplishment and a wonderful new tool that can improve the quality of our lives, if used effectively.
So we need to guard against this dark side. And our program has had, from the very beginning a significant percentage that was devoted to the ethical, legal and social implications of the Human Genome Program and all the possible abuses that this new discovery would entail, including what we had mentioned about genetic determinism. And certainly we have fought valiantly and will continue to do so, in terms of guarding against discrimination, for example, in employment and insurance because of genetic predisposition. We need to be as aggressive and as active as possible in making sure we use this information in an effective and fair way for the benefit of all people everywhere.
And with respect to patenting, yes, there is concern and also a lot of misunderstanding and misconception about patenting. And in this celebration that we had a couple of days ago, it was reassuring and very comforting to see that the two programs, both the one represented by Celera Genomics and the one represented by us in the public domain, share the same view about the patenting, that we should not rush to patent information unless it’s fairly complete and fulfills the requirements of patent law.
And in the case of gene patenting, in order for our application to have validity, it needs to be representing the whole patent. We need to know the specific protein that it codes for and the specific application that it does, and also include the specific use that the patent is applied for. Under those conditions, a patent should be issued, because, after all, it is the private sector that will translate the wonderful products that this project is delivering and turn them into discoveries that will improve the quality of our lives.
AMY GOODMAN: Dr. Ari Patrinos, people might wonder why the DOE is being represented here. But it was the Human Genome Project was coordinated by the National Institutes of Health and the Department of Energy.
Now, we just heard, before you came on, from Marya Norman-Bloodsaw, who is one of the plaintiffs in this lawsuit filed against Lawrence Berkley Lab, because she and many other workers were tested, not knowing they were being genetically tested for things like syphilis, whether they were pregnant, sickle cell anemia and other issues. They were not told of the results.
And at the same time, you have Lawrence Berkeley Lab, where they work, being one of those originally involved in the Human Genome Project and patenting some forty different genes over these years, one of the highest numbers in what the New York Times calls the "gene grab". So people having this information taken from them without them even knowing it.
We’re also joined on the telephone by Deborah Harry, who is a Northern Paiute Native American, and she’s the executive director of Indigenous Peoples Council on Biocolonialism, speaking to us from Nevada. Can you continue on that theme? You put out a press release, Deborah Harry, yesterday, expressing your concern about the Human Genome Project.
DEBORAH HARRY: Well, yeah, I think, you know, indigenous people are not dying from our genetic inheritance. We’re dying from a whole number of preventable diseases. We’re dying from causes related to economic oppression. We have people who freeze in the winter because they don’t have heat.
So, I mean, we feel that the resources that are being diverted towards genetic research and what I believe is genetic determinism away from real needs that would make a real difference in people’s lives, in terms of healthcare, access to clean food, clean water. And that’s where we would see a real difference in improving people’s health, is if we paid attention to those kinds of things.
AMY GOODMAN: Before we get to those things, what about this issue of the patenting of indigenous people’s genomes? What kind of history is there of that?
DEBORAH HARRY: We have quite a bit of experience with that, I’m afraid to say. And actually it’s the US government’s various agencies that have, in the past, applied for patents over the DNA of indigenous peoples. including indigenous people from the Solomon Islands, from the Guaymi in Panama, and a patent was actually granted to the US government, NIH and Department of Health and Social Services, over the cell lines of a Hagahai man from Papua New Guinea. So the commercialization issue is very real for us. I have no doubt that a lot of the current interests in the exploration of human genetic diversity, which means looking at diverse human populations, meaning us native peoples around the world, has a high profit motive factor behind it.
AMY GOODMAN: We’re going to have the doctor respond in a minute and continue in this discussion on the remarkable announcement this week of the sequencing of 90% of the human genome and also the implications when you have a greater corporate control now of knowledge and research than ever before in the history of the United States.
We have been talking with Dr. Dorothy Nelkin, Professor of Sociology at New York University. I want to thank her for joining us, as well as Robin Marantz Henig who wrote the book The Monk in the Garden: The Lost and Found Genius of Gregor Mendel, the Father of Genetics. They’ll be leaving, but staying with us is Dr. Ruth Hubbard, Professor Emeritus of Biology at Harvard University, Dr. Ari Patrinos, Director of the Office of Biological and Environmental Research at the Department of Energy, one of the sponsors of the Human Genome Project. Deborah Harry, also with us, Northern Paiute head of Indigenous Peoples Council on Biocolonialism.
You’re listening to Democracy Now! We’ll be back in a minute.
AMY GOODMAN: You’re listening to Pacifica Radio’s Democracy Now! I’m Amy Goodman, here with Juan Gonzalez, as we continue this discussion of the cracking of the human gene.
JUAN GONZALEZ: Yes, I’d like to continue the conversation as we left it off, with Dr. Ari Patrinos, the Director of the Office of Biological and Environmental Research at the Department of Energy. I’d like to ask you to respond to some of the concerns raised by Deborah Harry, in terms of the patenting of genes, directed specifically at certain groups of Americans, specifically, in this case, indigenous people.
DR. ARI PATRINOS: I’d like to respond to some of the comments I heard before your break. First of all, I want to make one clarification with respect to genetic diseases. The perception, unfortunately, is, among many people, that this project is mostly aimed towards rare genetic diseases. That is really a mistake. This project will help us deal with all diseases, because, as it turns out, almost every disease has some genetic component. So even the most terrible diseases, like cancer and hypertension and diabetes, all have genetic components. So this project isn’t just aimed at these rare genetic diseases. It’s an important distinction and an important point that we need to make.
Now, with respect to some of these other issues, I want to stress that the Human Genome Project is very different from the Human Genome Diversity Project, which has been referred to in some of the earlier comments. We are not the project, we are not the program that is looking at some of those issues and trying to identify and capitalize on rare strains of DNA in native peoples, and so on. The DNA that we have sequenced is DNA that comes from anonymous sources and done in the most ethical and acquired through the most ethical and vetted ways. And I certainly can’t speak for the patents that were referred to earlier. This is not the parts of the program that I have the privilege of representing, both on our side and also from the National Institutes of Health.
DR. RUTH HUBBARD: I would like to also amplify on some of the things that Deborah Harry raised.
AMY GOODMAN: Dr. Ruth Hubbard.
DR. RUTH HUBBARD: Yes, because I think she raised a very important point, that the thought that we are going to improve people’s health by diagnosing and treating people one by one, by discovering what their personal genetic susceptibility might be, is a complete illusion. I mean, that’s what public health, in fact, is about. And public health is what’s been responsible for improving the health of people in those more affluent countries, where the more affluent parts of the population are benefiting from the improvements in access to clean water and air and better food and varied food, and so on.
In the parts of the world where the money is not available for adequate public health measures, people continue to suffer and die from the same old infectious diseases that are borne in unclean water and food. And in our country, too, of course, things — you know, Dr. Patrinos mentions cancer. Well, the vast majority, some people say 90% of cancer, is of environmental origin.
DR. ARI PATRINOS: Indeed.
DR. RUTH HUBBARD: And there are genetic contributions in the sense that the environment produces changes in DNA. But the thought that we are going to improve people’s lives by testing each one of us and treating each one of us, while we allow the environment to deteriorate and to produce the carcinogens that we are continuing to produce at an accelerated rate, is simply not the realistic way to go at it. And I think Deborah Harry was absolutely right that it’s a diversion of attention and resources to focus that much on individuals and individual susceptibility.
JUAN GONZALEZ: Well, I’d like to ask Dr. Patrinos to respond to Professor Hubbard’s comments.
DR. ARI PATRINOS: Well, I guess I would disagree in terms of the relative investment of resources. If I compare from where I sit and know the resources that we are investing, in terms of environmental cleanup, broadly defined, and the investment we’ve made in sequencing in the Human Genome Project over the last few years, it’s actually a very small amount in the latter case.
I agree with you — I agree with the comment entirely, that the notion that somehow we can focus just at the genetic level and somehow let the environment deteriorate is very foolhardy. And we certainly need to address some of those serious environmental issues that were referred to, and only if we do both will we be successful. It’s just that, as I mentioned, the investment we’ve made in the Human Genome Project is miniscule compared with the investments we’re making in a lot of these other environmental problems.
And, in fact, if I may add, some of the advances that have been made possible through the Human Genome Project have all been new avenues for application in environmental remediation, for example, such as bioremediation. There’s also other applications in sustainable energy development and ways to better mitigate environmental problems like global climate change. So I think it’s this synergism of the sciences and the disciplines that will allow us to do this and have this creative balance between research in genetics and research in environmental cleanup and in their related functions.
JUAN GONZALEZ: Well, I’d also like to also bring in our last guest. We have about ten minutes left in the discussion. And for some, the genie is already out of the bottle. And whether you think it’s a positive development or has enormous dangers, the reality is that the Human Genome Project now has made public its findings.
And we’re joined now by Jose Morales, who’s the Director of the Public Interest Biotechnology, and he focuses on risk assessment and how genetic information can be used to help communities of color. He’s formerly — he’s joining us from Oakland, California, but he used to live in New York City, where he was a founder of the Environmental Justice Alliance and the Toxic Avengers. Jose, welcome to Democracy Now!
JOSE MORALES: Good morning. Thanks for having me.
JUAN GONZALEZ: And could you tell us what you are trying to do?
JOSE MORALES: Well, basically, we feel that civil society deserves to be able to utilize the tools that have developed with modern technology, biotechnology, to be able to further purposes that are of interest to us, such as having an environment that sustains health, especially for communities of color. And we think that, certainly, public health measures are important, but that doesn’t mean that we can’t also use the tools that humanity has been able to generate in that struggle, as well.
AMY GOODMAN: Specifically, what do you mean? Are you concerned about this kind of — you get the information, as Dr. Ari Patrinos is talking about, but then the corporations move in and the whole issue of the privatizing of this knowledge or the profiting off of it?
JOSE MORALES: Our effort is to be able to develop and utilize biotechnologies in close conjunction with communities and for the communities thereby to be able to control the information that’s generated and use it as they see fit. And we believe that, you know, pretty much everybody knows that the institutions of higher learning and government are pretty separate from communities, especially communities of color. And so we want to be able to come up with a strategy that puts it much closer to the ground and to be able to explain to people, in a very good way, the kinds of information that they need to know, so that, you know, this technology and the resulting information is more democratically disseminated.
AMY GOODMAN: Deborah Harry of the Indigenous Peoples Council on Biocolonialism, do you think this is possible?
DEBORAH HARRY: Well, I really don’t think that it’s going to take the use of science and some of these new technologies, especially in genetics, to understand that a contaminated environment is causing illness. So I don’t see a need for application of biotechnologies towards that end. I think we need to pay more attention to making changes to the actual cleanup.
I think it’s important also to — I’m referring to Dr. Patrinos’s comment that it was not the government, but another program, that has patented indigenous people’s genes. Actually, it was public programs. It was actual institutes at NIH that had filed for these patents. And I think I’m very concerned that the public work and public research is the front door to future commercialization of the human genetics, whether it’s diverse populations or whether it’s the average human genome.
JUAN GONZALEZ: I’d like to bring in Professor Ruth Hubbard. Your response to the potential for a non-profit or civic or public orientation to some of the technology that’s represented by the genome project?
DR. RUTH HUBBARD: I think there would need to be an extremely critical look at what aspects of it, in fact, would benefit large numbers of people. I think the extreme individualization that is implicit in genetic diagnosis and therapy doesn’t lend itself very well to addressing the needs of populations, be they underserved or over-served. I think it plays in with the extremely individualistic way in which we are looking at improvements in health. And that hasn’t paid off in the past and will not pay off in the future.
AMY GOODMAN: Dr. Hubbard, you’re particularly looking at prenatal diagnostics. How does that fit into this overall picture?
DR. RUTH HUBBARD: Well, I think that is an enormously important and fraught area, because prenatal testing certainly is one of the things that is being pushed and will increasingly be pushed by this technology that supposedly detects tendencies that might or might not become evident. And it is the one place where women, in fact, people are told that there’s something they can do about it, to it, to terminate a pregnancy if there is an indication that something might be wrong with their future child. Now, these kinds of information are rarely certain, and even when we know that there will be a problem, it is rarely possible to predict how serious the problem will be in an individual situation.
And yet, being given that kind of information prenatally, puts people — confronts people with extremely difficult decisions, which we in our society call choices, but that I think on the whole tend to make life more difficult, rather than easier. I think genetic prediction is always problematic, because genes never act or function by themselves in isolation.
JUAN GONZALEZ: I’d like to — one final question to Dr. Patrinos in the couple of minutes we have left. Looking down the line now, do you envision the possibility of private companies deciding, well, we want to create — we want to use this knowledge for the purposes of eugenics, for creating the superior human being or for the purposes of developing a drug to deal with those individuals who have propensity toward violence. And are those dangers, do you foresee us having to deal with those soon?
DR. ARI PATRINOS: Although there’s understandable anxiety and concern about some of those issues that you raised, I am very optimistic that society will rise to the occasion, and collectively, as human beings, we will put in place the rules, the laws and the systems that will prevent against such abuses.
AMY GOODMAN: But, Dr. Patrinos, you’re not talking about a level playing field of civil society, since corporations so much control what’s happening right now with this research.
DR. ARI PATRINOS: I don’t think we — we have not seen and I don’t think we will see abuses on the part of companies along those directions. A lot of it will be self-policing, but a lot of it will be through legislation that will guard against such abuses. You may call me an optimist, but I think the opportunities that are enabled through the Human Genome Project are all quite positive. They do have the dark side. But I think as I’ve said before, we will rise to this occasion and avoid this dark side effectively.
AMY GOODMAN: Deborah Harry, we have ten seconds. I want you to have the chance to give out your website, where you put out alternative information or raising concerns and also to respond.
DEBORAH HARRY: Thank you. I do hope that the public will get more information, become more critical of this work, and I think that they need to hear alternative voices and to hear alternative views and what we are often shared, shown. So our web site is at www.ipcb.org.
AMY GOODMAN: That’s IPCB, as in biocolonialism.org.
DEBORAH HARRY: IPCB, yes. I think it’s the public that has to understand and set limits for science. I don’t think science — scientists are the best watchdogs for their own actions.
AMY GOODMAN: Deborah Harry of Indigenous Peoples Council on Biocolonialism, thank you. Dr. Ruth Hubbard, Professor Emeritus of Biology at Harvard University, author of among other books, Exploding the Gene Myth, thanks for being with us from Massachusetts. Jose Morales, Director of Public Interest, Biotechnology in Oakland, thanks for joining us. And Dr. Ari Patrinos, Director of the Office of Biological and Environmental Research at the Department of Energy, one of the sponsors of the Human Genome Project, thanks for joining us from Washington.