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Students Discuss Ethical Issues at Human Genome Conference

By Charu Chaudhry
Staff Reporter

Students, scientists, and government officials convened at MIT last weekend for the first Human Genome Project Conference.

The student-run conference was held to improve understanding of the social and ethical issues raised by human genome research and to formulate policy solutions, said Benjamin Sun, the director of the HGPC.

Uzma Ahmad, a conference staff member, said, "What was remarkable about the conference was that the participants came from such diverse backgrounds, ranging from high school and college students to professionals in specialized fields related to the issues. It was striking to see how a common interest - the responsible use of genetic information that comes out of the HGP - can bring so many people together."

Most of the participants were college students.

The Human Genome Project, started in 1991, aims to map all human genes and identify the DNA base pairs that comprise each of these mapped genes. There are over 3 billion DNA base pairs in the human genome.

The HGP allocates funds to consider the problems raised by its research. With a budget of $5 million, the project has the "largest biomedical ethics program in this country and probably the world," said Nancy Wexler, chair of the National Center for Human Genome Research's Committee on Ethical, Legal, and Social Issues (ELSI).

Conference featured workgroups

Student participants were organized in different workgroup sessions to discuss the issues, learn policy-making, and formulate potential solutions to the legal, social, economic, and political challenges raised by the HGP.

The workgroups addressed issues such as: patenting and commercialization, scientific responsibility, reproductive rights and prenatal testing, eugenics, privacy, genetic discrimination, and genetic testing.

The conference also featured 14 keynote speakers from diverse professional perspectives, and panel discussions addressing various genetic issues.

Professor Charles R. Cantor, of the biomedical engineering department at Boston University Medical School, said that the purpose of the HGP is to find the estimated 100,000 genes in the human genome and "make them available so people can study them."

Cantor said, "What is special about the HGP as compared with most other large scientific endeavors is that from the outset we knew it could not fail, and we also knew that it would have profound implications and influence the life of everybody on the planet."

"Ninety-five percent of all human genes will be at hand sequenced within the next year to 18 months. The bottlenecks are getting the necessary technology to process the information and then dealing with some of the consequences of actually possessing information of this nature," Cantor added.

Groups discuss troubling issues

Student participants generally agreed that they appreciated the complexity of the issues and the need for policies.

Workgroup sessions were not unanimous in their policy recommendations. Many participants felt that the issues were very broad, and extensive debating of definitions and assumptions occurred before decisions on initiatives and legislation were made.

The reproductive rights workgroup discussed such issues as: determining which traits should be genetically tested since results may influence abortion decisions, defining an ethical boundary for what constitutes a genetic defect, and deciding who should have the authority to terminate pregnancies.

The eugenics workgroup questioned the morality of eugenics and other issues. Eugenics states that the human species as a whole can be improved by reproductive behavior regulation, to perpetuate desirable traits and minimize undesirable ones.

The workgroup raised complex questions: Should genetic screening for common heritable diseases be a requirement for obtaining a marriage license? Are sterilization programs ethical if they are prescribed based on genetic test results? Are eugenics goals such as enhancement of intelligence legitimate?

Jonathan Beckwith, a research professor at Harvard Medical School, said, "We better not get in this [eugenics] game. We must never play with trying to homogenize the gene pool."

One workgroup dealt with human rights issues related to the use of genetic information, including who should have the right to access a person's genetic information. For example, participants discussed whether insurance companies should have access to their customer's genetic information, and how this would affect the premiums that the insurance companies charge.

The privatization and commercialization workgroup grappled with issues like the patenting of genetic information. Participants discussed whether pieces of the human genome can be legally patented, when current law requires that patentable goods be inventions or processes.

Richard C. Lewontin, professor of zoology and biology at Harvard University, said that it is not unusual for science to be applied in commercial uses. "I have to say that I am somewhat amused from a distance at the uproar about the commercialization of DNA. I mean, what do you think goes on with everything else? The story of the world in which we live is a story of constant search for new fields for capital."

The primary sponsor of the HGPC was Student Pugwash USA (SPUSA), a national non-profit organization dedicated to addressing global problems by the responsible use of science and technology. Other corporate and government sponsors were Mansanto, Biogen, the U.S. Department of Energy, the International Committee against Racism, and the Neurosciences Institute.