A Voice of Reason on the Human Genome Project
A Conversation with Thomas Shannon, Professor of Social Ethics
FOR IMMEDIATE RELEASE/May 11, 2000
Contact: WPI Media & Community Relations
PROLIFIC WRITING: Thomas Shannon (right), WPI professor of social ethics, is shown with 25 books he has written. Roger Gottlieb (left) professor of philosophy and Shannon's colleague in the Department of Humanities and Arts, has produced 10 volumes.
- Author of 25 books, including "Made in Whose Image? Genetic Engineering and Christian Ethics" (Humanity Books, 2000)
- A main participant in the first-ever grant to look at religious issues related to genetics through the Human Genome project. The three-year grant was sponsored by Ethical Legal and Social Issues (ELSI) and funded by the National Institutes of Health through the Center for Theology and Natural Sciences at the Graduate Theological Union in Berkeley, Calif.
- Has taught at Worcester Polytechnic Institute, Worcester, Mass., since 1973
- Professor of social ethics, Department of Humanities and Arts
- Research interest is in the field of ethics, particularly bioethics and medical ethics
- B.A. from Quincy College; S.T.B. from St. Joseph Seminary in sacred theology; S.T.M. from Boston University School of Theology in sacred theology; Ph.D. from Boston University Graduate School in social ethics
What Shannon says about:
The Human Genome Project: "It's about who gets there first. It's rivalry. It's very high stakes. There's a lot of money riding on this, so this is a huge economic agenda. Scientists are developing a map that shows where gene X is and where gene Y is. The big question is, what's it do? And does the gene do it by itself, or does it rely on the gene next to it to help?
"The critical question is gene function. Once they know that, you have the possibility of therapy. So there's really a three-stage process here. It's going to take us a couple hundred years to figure out what this stuff does. So, part of the problem is the way the funding was obtained for the Genome Project. It was based on a lot of hype that we're going to be able to cure everything. One scientist said we'll be able to cure poverty and homelessness once we solve the Genome Project. Hey, could you give us some details here? This stuff is really complicated and it's going to take a long time to figure out.
"We've known, for example, where the gene is that causes Huntington's disease for five years now. What can we do with that information? Well, we can test to see if you have it or don't have it. Most people choose not to get tested. So what does that say? But has any therapy been developed yet? No. It's expensive. It's difficult. And this is just one gene. This is the easy case. But people are going to assume that the company (with the gene map) is going to be able to sell this information and people will be able to use it. And that's correct. But it's not going to be immediately translated into a therapy. It could take decades. People have been working on cloning for 50 years and they've finally figured out the way to do it. It will be similar for the Human Genome Project."
Genetic engineering: "When I give talks on genetics, I always talk about eugenics because our country has a bad history of applying genetics. There has been a lot of involuntary sterilization of the mentally ill and prisoners. It's a hideous history in this country. We need to remember what we're talking about here is applying information. How are we going to do that?
"One of the good things that's happened in this country, although it's wobbly in places, is that any research that is subsidized by the federal government has to go through an ethical review. Most universities do that too. So it's a check-and-balance system. But when you use a private lab, that system doesn't apply. Some private companies have set up an ethics committee to review their work before it is done. There are people who will argue, 'Well, sure, but they paid them.' But these are private consultants and they are putting in an enormous amount of time on a very complicated thing, and they should be paid. At least the company is putting it out for review. Scientists can look at these things and think about some of the applications. They can say, 'Let's think about this before we rush into it.'
"The problem is that the economics are driving everything. Look at this $22 stock jump recently for Celera Genomics (a company involved in the project). The stock market goes wild, and nobody thinks to say, 'Stop.'"
Genetically engineered food: "I have not yet seen any direct, clear evidence that a human has been harmed by ingesting genetically engineered food. Prevention magazine has an article this month on genetically engineered food, and it was filled with words like 'might,' 'maybe,' 'could,' 'possibly,' so you can see that it's all speculation. Is there any evidence?
"There's been one article published, about a soybean manufacturer who put into soybean a gene from the Brazil nut. They did that so they could provide an enzyme for soybeans used for animal feed, an enzyme that soybean didn't have but that animals needed. But then somebody thought, while they were doing this, 'Can we separate soybeans used for animals and soybeans used for humans?' Because they knew that people can be allergic to Brazil nuts.
"So they did a test, and sure enough, if someone ate this soybean who was allergic to Brazil nuts, they developed some reactions. What did the company do? They stopped making it. The anti-biotech people could point to this and say, 'Look, this is the problem with genetic engineering.' But the other side of the coin is, they looked at this and stopped it.
"The issue is, who's in charge of this? Critics will say we rely too much on manufacturers. But the organic food we eat now is the result of generations of blending. The difference is, up till now, it's all been within a species. But now we can blend genes between species.
"My point is, what's the evidence of harm? Should you do good research? Yes. Should you monitor this research? Yes, of course you do. On the other hand, given what has happened so far, has there been a problem? I haven't seen any.
"The word that got coined about five or six years ago is 'Frankenfood.' It's very clever. It's tapping into the fears of technology. The big difference is that if you look at Europe, they are frothing at the mouth over this stuff. But they have among the worst regulatory systems to monitor anything. If you look at their blood and HIV monitoring, they haven't done too good a job at this. Or on mad cow disease, which people are terrified about. What was the cause of this? Is it bioengineered products? No. It was really sloppy manufacturing processes for cattle. You throw raw brains into cattle feed and this is what happens. Part of it is their own regulatory system; part of it is a whole different culture in Europe. And part of it is people who have this obsession that whatever nature is, is the way it's supposed to be. Nature should be left alone. But inherently, putting a gene from one thing into another isn't in itself bad or dangerous.
"My hope is that people will take the lessons of the past and apply them to the problems of tomorrow. Just be responsible in how you do it."
Fetal testing: "Prenatal diagnosis will mean making some very tough decisions. There's also the reality that some genes that cause diseases in the individual are good for the population. The classic example is sickle cell anemia, where if you're a carrier, you have a protection against malaria. If you are living in Africa, this is good for the population, but bad for the individual who gets the disease. Cystic fibrosis has a parallel in resistance to cholera in the population. So you have to think, okay, the gene causes this, but why has it stayed in the population?
"We also assume biomedical information is private, but you can't find something out about yourself without implicating other people. If you get tested, that can say something to the rest of your family. They may not want to know that information. And the insurance implications are another issue. A genetic test is more sophisticated than a heart test, for example. And now, a preexisting condition, which can make you ineligible for insurance, can exist from conception."
The future of medicine: "Which way are we going with medicine? Do we want to keep going with the stuff we see on (the television drama) ER or do we want to shift the focus to preventative public health? That's a very important decision.
"How do you use the benefits that will come from the Genome Project? If we can find a way to treat or prevent some genetic diseases, fine. But there's a high financial cost of doing that. And who's going to receive that benefit? Only those people who are both insured and whose insurance will cover it.
"I think we are at a junction here. We should not stop contemporary research, but have we gone far enough in that direction and is it now time to rethink some of these preventive public health measures and put a lot of effort there for the benefit of the whole population? That's a real critical question and there's no public debate about that.
"The assumption when we go to a doctor is, we're going to get something, a pill, a treatment. The assumption is that the doctor is not going to give us advice, which is a lot of what people need. But advice takes a long time and that's counterproductive to the HMO model. There's no product so you don't get a profit from selling something. There's no treatment so you don't utilize all those resources that are sitting there. And you aren't going to be able to make a TV show about that. You can't really popularize a show about a doctor saying, 'You know, you really need to change your diet.' That's not an exciting television show. One of the major disservices that ER has done is given the impression that when you are resuscitated, you survive. Seventy percent don't. So there's a split between prevention and high-tech medicine."
Thomas Shannon can be reached by e-mail at firstname.lastname@example.org or at the Department of Humanities and Arts, Worcester Polytechnic Institute, 100 Institute Road, Worcester, MA 01609-2280. Tel: 508-831-5468, 831-5246; Fax: 508-831-5932