Analyzing the Effects of the Human Genome Project

Huddled in classrooms at MIT, about 200 students and professionals from across the nation engaged this weekend in a giant role playing simulation to debate the pressing issues of human genetics.

The Human Genome Project conference, which was organized by Harvard students, convened Friday and Saturday to educate students about the social implications of the Human Genome Project, a 15-year nationwide effort to map the entire sequence of human genes.

"The implications for the impacts of this kind of information's on people's lives in enormous," said MIT sophomore Anthony Y. Ku, who helped organize the conference. "There are going to be many social and ethical issues raised by the Human Genome Project, and the earlier we start addressing them, the better."

The two-day $10,000 conference was unique in that it was completely student run, said conference director Benjamin Sun '95. Although advisors helped plan the conference during its initial stages, 24 students from three colleges organized the rest.

About 40 percent of the organizers came from Harvard, 40 percent from MIT and about 20 percent from Boston University, Sun said.

Both Harvard and MIT students volunteered to house the participants said Corinna Cosmas, housing director for the conference.

Sun and the other conference organizers received primary funding for the conference from Student Pugwash USA, a national nonprofit organization aimed at training students to solve global problems with science and technology.

The Pugwash grant came from a portion of the Human Genome Project's budget designated specifically for education. Sun and the other organizers received the grant after submitting a proposal outlining the conference's main objectives.

"One of the main goals of this conference is to focus public attention on the ethical uses of science," said Daihung V. Do '95, research director for the conference. "Scientific discoveries must be understood in their social, ethical and legal contexts."

"Another main goal of this conference is to try to encourage greater social responsibility, not just for scientists but for non-scientists as well," Do said.

Conference participants ranged from high school students to adult professionals. Participants were required to pay a $12 fee and write an essay on policy ideas before attending.

A New Approach: Workgroups

According to conference organizers, a series of workgroup sessions formed the core of the conference experience. The sessions allowed groups of 10 participants each to express and develop their ideas on bio-ethics through role-playing games.

Rather than simply lecture students, organizers said they wanted to motivate participants to "hammer out ideas" by having them act out the roles of policymakers, insurance companies and other interest groups affected by the project.

"In 20 to 30 years, it will be the students who are in charge," said Sun. "We must prepare students to think how to problem solve."

Four intensive workgroup sessions focused on three aspects of the bio-ethics debate: reproductive rights and eugenics; privacy, insurance and employment; and patenting and commercialization.

For example, some participants were asked whether couples had the right to terminate a pregnancy if test results indicated the fetus had 'defective' genes.

Participants were asked to formulate an opinion based on their assignment to one of four interest groups: Parents for Genetic Rights, the American Business Association, the American Board of Physicians or the National Committee on Human Rights.

Opposing groups were asked to come to a consensus in order to simulate the real-life process of policy making.

"In society there are a lot of competing interests--the government, doctors, firms, etc.," Sun said. "The question we want students to think about is how one reconciles all these interests into a workable policy."

Another group was charged with formulating a health insurance plan for a fictitious company called Winchester, Inc.

The group discussed whether the company should demand genetic testing of their employees to determine their health insurance and if so, which genetic conditions would require decreased insurance coverage.

The debate revealed a sharp dichotomy between the perspectives of the young and the old.

Anne L. Lewis, a high school guidance counselor, said, "I was impressed by native of the students who thought that insurance companies shouldn't be making money."

But students said they often found that older people came into the discussions with rigid mindsets.

"It seemed as if some of the adults had an axe to grind," said Julia M. Clay of Kalamazoo.

Nevertheless, most participants seemed satisfied with what they had learned and gained through the group interaction.

"I think this conference has been fantastic so far. I'm from Cazenovia College in Cazenovia, New York and I usually don't get a chance to exchange ideas with world class scientists, people who are actually here," said participants Phil R. Hamilton. "Overall I must say that I am pleasantly surprised."

"I think this conference is something that is very necessary," said Cornell senior Linda E. Wieselquist. "The issues we are discussing here are crucial to the welfare of society, and we can't have the scientists in one corner and the rest of society in another."

Debates on Privacy

In addition to the workgroup sessions, the conference featured four keynote' addresses and three panel discussions given by prominent scientists.

One of the themes addressed by many of the speakers was the degree to which genetic information should be private and how that privacy relates to employment and insurance.

"The most critical pressing issue in society today is the loss of privacy," said Dr. Helen Doris Keller, director of the division of human molecular genetics in the department of surgery at Washington University's School of Medicine.

"The fact that a person's genome gives personalized, unique information means that access to such a genome could lay the grounds for severe genetic discrimination," she said.

Keller said a person's social security number was one example in which private information could quickly become public.

"Once you sign that number on a check, it becomes part of the information highway accessible to all," Keller said.

Wendy McGoodwin, executive director for the Council of Responsible Genetics in Cambridge, Mass., argued that using genetic tests in the context of employment, insurance and access to public services is inappropriate because the tests only reveal a limited amount of information.

"A genetic test tells nothing of the severity of the disorder," McGoodwin said. "This ambiguity makes making predictions about an individual based on these tests unfair."

In some cases, people are dissuaded from taking genetic tests out of fear that the test results will be placed on their permanent medical records, McGoodwin said.

"People are afraid to go in for genetic testing," McGoodwin said. "I have a friend whose father has Huntington's disease, which means she has a fifty-fifty chance of carrying the gene. She is curious to know whether she has the gene but is afraid to go in for testing because if the test comes out positive, that result may be used against her by various agencies."

But other speakers argued that companies should be able to request genetic information so that they can maintain a profit.

"It's only fair to the insurance companies if the individual comes to them with cards face up," said Rob Bier, director of information services for the American Council of Life Insurance. "Any tests results that the individual knows about the insurance agency should know about so that a fair assessment of the risk can be made."

To support his statement, Bier cited how women are charged lower insurance rates because they generally live longer than men.

Patents and Commercialization

Along with the question, of profit, participants also addressed whether companies should be able to capitalize on genetic discoveries through patents and commercialization.

Although the conference directors noted that the human genome represents "man's common heredity," Professor of Biology Richard C. Lewontin said that genome research is expensive and time-consuming.

"Patent laws must protect the innovator," said Lewontin.

As an example, Lewontin cited the nearly $4.5 million spent by the National Institutes of Health to find the gene for breast cancer.

"This is not an issue for philosophical debate, but for lawyers," he said.

Perfect Babies?

Speakers emphasized that it was important to discriminate between manipulations of genes that are necessary, and those that are merely preferred.

For example, aborting a fetus with a fatal genetic defect may hold different implications than absorbing one in which the "abnormal" gene is less severe, as in Down's syndrome.

"[Down's Syndrome] kids have the characteristic facial features and learn slowly, but they grow into cuddly, sweet teenagers that are a real benefit to society," said Dr. Susan Pauker, chief of medical genetics at the Harvard Community Health Plan.

"The yuppie controlling couple, however, wants perfect children and may terminate the pregnancy before getting all the information," Pauker said.

Such problems result from the lack of information and counseling in genetics, Pauker said. She noted that there are only, about 1,000 genetic counselors in the United States.

The Publicity Stigma

One reason why there is an apparent division between the scientist and the social activist is that there is a stigma attached to scientists entering the public spotlight said. xDr. Jonathan L. Beckwith, American Cancer Society researches professor of microbiology and molecular genetics at Harvard Medical School.

Beckwith described how one scientist who had won a Nobel prize in genetics heard derogatory comments from his peers because of his involvement's with television programming.

Beckwith said scientists ridiculed him for having an "ego-trip" and even said "he was not qualified enough in his field and so switched to another."

"Issues of social responsibility are invading the sciences," said Beck with, "Scientists feel they must choose between science and being active in social issues."

But the students don't seem discouraged.

"The questions here are complex and very hard to take a stance on, but with all thing enthusiasm nothing seems beyond our capabilities," said Wieselquist.