Charles Delisi on Dangers of Genomic Research
  Charles Delisi     Biography    
Recorded: 08 Sep 2003

I think the main problems we’re facing now, genetics has presented to us the immediate problems, are one of access. I am deeply concerned and actually a little bit frustrated that we talk a lot and I certainly did my share of talking about the revolution and the enormous effects and benefits it’s going to have in medicine. You can ask yourself though, who is it going to affect? Let’s say all these great things happen. We have a medical revolution and we’re able to prognosticate very early on and warn people and we can diagnose much more sensitively. Who is all that going to affect? And the answer is that it’s going to affect no one to a first approximation, and the reason that I say that is because the technologies are very costly. And the third world as the economic structure of the world currently exists access by third world or even by poor people in first world countries is going to be very, very difficult. So there are big economic barriers to the impact. So that I don’t see it—well, I see it as a danger in the sense that it could polarize society. I mean if here in this country, for example, if there are people that had access to repro-genetic technology which is going to remain high. The cost of that are not going to come down easily because they’re very expensive because they are highly skilled people involved. I think that could certainly have a polarizing effect on society where you can develop sub populations that are very, very healthy. And others that never have access to it. So that I see as an important intermediate range danger. The more immediate problems involving access concern privacy. The concern that people may not use testing or may not use diagnostics simply because their privacy isn’t guaranteed right now. There is no national law which guarantees privacy of medical records. There are national laws which guarantee privacy in blockbusters, but there is no national guarantee privacy to medical record. Different states—our state, Massachusetts does have laws protecting privacy and also has mechanisms set up to punish people who violate those laws. Our neighboring states, Maine and New Hampshire do not. They do in one respect, and they don’t in another. So that, I think, is the most immediate problem; the problem of two types of access; one type of access arising from concerns about privacy, the other more fundamental type of access arising from economic barriers, and 99.9 percent of the people of the world really not having access to some of the most important technologies as they develop. And that is a very complex problem that we need to do something about. But the longer term problems involving polarization involving designing—y9u know, really involving genetic manipulations, those I think we’ll have to more thought—I mean I don’t think, I’m kind of disappointed that with fifteen years of ethical and legal studies I’ve seen very little of it actually converted into policy of any sort. I’ve seen very little impact on legislation. I’ve seen a lot of very, very good thinking, a lot of serious thinking and maybe it just takes a while. But I don’t see very much happening privacy being an example of it. I think we have a long way to go. And one of the problems which is the most immediate problems, so how are we going to address any other problems that are actually probably more complex and longer ranged. And if we’re not making progress on this one, I don’t know what we’re going to do about the others. But we—

We need to start, yes! And that has to happen at a very high level. There have to be people in Washington; in fact, the president should be providing more moral leadership on this. I mean the complex social, economic issues surrounding it need to be addressed, and that really should start with a special panel with people from science, from the social sciences, from the humanities, from a lot of different areas, of course, from ethics, moralists and what not getting together and beginning to define the issues precisely and then beginning to layout a road map for how they are going to begin to approach these things because it’s going to impact the world.

Charles DeLisi did pioneering work in theoretical and mathematical immunology. He received his Ph.D. in physics and did postdoctoral studies in the chemistry department at Yale University researching RNA structure. He became a theoretical physicist at Los Alamos National Laboratory and then moved to the National Institute of Health, where he worked on molecular and cell immunology for ten years.

DeLisi is currently director of the Biomolecular Systems Laboratory, Chair of the Bioinformatics Program, Metcalf Professor of Science and Engineering and Dean Emeritus of the College of Engineering at Boston University.

Charles DeLisi develops computational methods for high throughput genomic and proteomic analysis. His laboratory is helping to develop technologies for fingerprinting the complete molecular state of a cell. He is interested in finding computational methods for determining protein function and researches the structural basis of signal translation by membrane bound receptors, the structural basis of voltage gating, and the docking of peptide hormones and neurotransmitters at their sites of action.

In 1986, DeLisi and Watson met at a CSHL meeting and spoke about their interests in sequencing the human genome.