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	Charles DeLisi initiated the Human Genome Project. Photo by Vernon Doucette

By Tim Stoddard

In case you missed it, April 25, 2003, was national DNA Day, marking the 50th anniversary of the discovery of the structure of DNA by James Watson and Francis Crick. The world’s first glimpse of the blueprint of life was a humble black-and-white sketch of a double helix (drawn by Crick’s wife), but the finding set off a molecular revolution that’s given us a staggering view of the structure, function, and behavior of DNA. In fact, only a few weeks before DNA Day, the leaders of the international 13-year-old Human Genome Project announced that they had finished sequencing the 3.1 billion units that comprise the human genome.

The commemoration of Watson’s and Crick’s achievement continues this month when BU’s Center for Philosophy and History of Science hosts a symposium on Monday, September 29, in which BU faculty will examine the most pressing ethical concerns stemming from the discovery of DNA. Entitled Fifty Years of the Molecular Revolution: Ethics and Policy, the symposium is part of the 44th annual program for the Boston Colloquium for Philosophy of Science.

“ While there have been many conferences devoted to discussing the discovery and subsequent scientific developments of that key finding, this is one of the few that explores the social implications of the molecular revolution,” says symposium organizer Alfred Tauber, a CAS professor of philosophy, a MED professor of medicine, and director of the Center for Philosophy and History of Science. “Boston University is fortunate to have investigators who have thought carefully about the complex consequences of genetic technology, genetic identity, and genetic determinism that follow from the advances that have been made in human molecular biology.”

Genetic discrimination

Genomics promises to revolutionize biology and medicine in many ways, leading to new understandings of disease and new treatments. But every scientific step forward has spawned myriad social and ethical problems. George Annas, an SPH professor of health law and an internationally respected ethicist, will lead an opening session focusing on whether scientists are devoting enough attention to the ethical ramifications of their work. “Do we have any intention of taking ethics seriously, or are we just paying lip service, ethical cover if you will, to go ahead and do whatever we want with genomics?” Annas asks.

The great hope for genomics, he says, is that it will scientifically demonstrate that there is no genetic basis for race. Indeed, when the rough draft of the human genome was published three years ago, some researchers said that the sequence finally showed that we are all African under the skin. But Annas is concerned that the science that extinguishes racism will lead to a new kind of discrimination, which he calls genism. “Instead of subdividing people based on the color of their skin, we’ll now subdivide them based on their genomes,” he explains. “Genomics has shown that we’re 99.9 percent the same, but human beings tend to concentrate on that 0.1 percent of difference. If we decide to search for genetic variations in the 0.1 percent of our DNA that is not the same, we’ll find them and use them against each other.”

The problem, Annas says, is that there is virtually no legislation in place to protect an individual’s genetic privacy. “Everybody agrees that genism would be terrible, but we have nothing in place at a federal level to stop that, except rhetoric.”

Alfred Tauber, organizer of the symposium. Photo by Vernon Doucette

Mind your own genes

The potential exploitation of the genome may be a future threat, but Michael Baram has serious concerns about how biomedical research is currently conducted in the United States. Baram, a LAW professor and director of the Center for Law and Technology, will focus on the decision-making process the Food and Drug Administration (FDA) uses for approving clinical trials on human subjects. “I have been struck by how many important decisions in medical research are based on what used to be called Bentham’s felicific calculus, which is essentially a cost-benefit analysis,” Baram says. “When you examine how the FDA’s decisions are made, in every case they use a variation of cost-benefit analysis that asks whether the risk to the human subjects is offset by the benefits to society. That’s a very easy decision for most researchers to make, because to them, their research is the most important thing in the world. There’s a tendency to overvaluate the importance of the research, and underestimate the risk to the human subjects.”

As a physician involved in designing clinical trials, Joseph Loscalzo will have additional insights into the course of genomic research. Loscalzo, a MED professor and chairman of the department of medicine, notes that general misunderstandings about genomics have stymied research efforts. “One of the heresies in clinical research involving DNA is that genes determine all aspects of human biology,” he says. “This is the strict genetic determinist argument: knowing the genetic sequence of an individual by itself will give you all the information you need to know about what that person’s phenotype, or physical manifestation, will be. While that’s true for certain specific genes and their polypeptide products, it generally is not true for an entire person.”

People are composed of proteins, and while genes are the blueprints for proteins, many changes happen to proteins after they’re manufactured. “One needs to know both the genetic makeup of an individual,” he says, “as well as his or her environmental exposures to understand exactly what the biology, and pathobiology, will be for that person.” Loscalzo will argue against genetic determinism as it relates to a number of issues, including the commercialization of genomes and genetic privacy. “We have to discuss ways by which society can benefit from knowledge of the genome without compromising the individual’s right to privacy or safety,” he says. “All gene sequences should be publicly accessible to all investigators, and they should all be handled in an encrypted manner to ensure donor anonymity.”

The future of the species

When Charles DeLisi ponders the future course of genomics, he reflects on the lessons of scientific history. In his remarks at the symposium, DeLisi, senior associate provost of biosciences and Arthur G. B. Metcalf Professor of Science and Engineering, will reflect on some examples of rapid changes in science and technology in the past and how they can inform the future. “It is difficult to overestimate the rate of technological change,” he says. “The fact that for nearly four decades the density of transistors on a computer chip doubled every 18 months is in some ways an icon for societal growth in general. We see more than exponential growth in DNA sequencing, and that has all sorts of ramifications for accelerated economic and medical change. And before the genome project, biology by some measure also seemed to be growing exponentially, relative to what it had been 30 years earlier. The question is whether the pace of discovery is now moving so fast that we might be losing control.

“ The past informs the future,” says DeLisi, who is credited with being the father of the Human Genome Project, “because there are certain aspects of the human psychology that don’t change. But recent developments in computers and biotechnology suggest intelligent life will soon evolve. It is not outlandish to think that 150 or 200 years from now other highly intelligent life forms will be coexisting with us. In the past, speciation events occurred on a time scale of millions of years; in the future they will no doubt occur with increasing rapidity. We are not at the end of the line evolutionarily, and the question is, how soon will the next step come? When it does come, we will alter so radically that we’ll be fundamentally psychologically different from the species we are now.”

Fifty Years of the Molecular Revolution: Ethics and Policy is free and open to the public. The sessions meet on Monday, September 29, in the Terrace Lounge of the George Sherman Union. For a detailed schedule, visit http://www.bu.edu/philo/centers/cphs/03-04/sep29-2003.html.

19 September 2003
Boston University
Office of University Relations