Human Genome News, April-June 1996; 7(6)
Santa Fe '96
ELSI Projects Target Diverse Audience
Worldwide progress toward obtaining a human DNA reference sequence has heightened the urgency of dealing with a host of challenging ethical, legal, and social issues (ELSI) surrounding the data. From the start, the DOE Human Genome Program has devoted up to 3% of its annual budget to addressing these topics, focusing particularly on the privacy and confidentiality of genetic information (including issues of ownership and commercialization) and on the development of educational materials geared toward a diverse public.
Highlights of five engaging ELSI presentations follow.
Crime and Punishment Meet Genomics: Responsibility Reconsidered
In a compelling dramatization of genetics in the courtroom, Franklin Zweig (Einstein Institute), speaking before Judge Rosalyn Bell (Maryland Court of Special Appeals), rendered closing arguments for and against the death penalty in a case involving a convicted murderer who may have had a genetic predisposition toward violence. Zweig then charged the audience to act as a jury and cast their votes for the death penalty or life in prison. Ballots were collected, tallied, and reported the next day, with a majority voting against the death penalty. [This exercise was based on an actual case. The convicted murderer was executed in April.]
The demonstration effectively drove home Zweig's point: Molecular biology makes trouble for the courts. About 30,000 federal and state judges, representing the pinnacle of the government's authority, want to dispense justice through fair trials. The definitive power is the ability of the state to take the life of a person convicted of a capital crime. Recent years have seen that power rise, fueled in part by a citizenry at wit's end about violence and the victims it creates. Interpretation of genomic research, Zweig asserted, can contribute to the decision about taking a defendant's life.
The question asked of the scientific community by the justice system, he continued, is clear but impossible to answer: Did the criminal act lie in the defendant's genes? If so, should people be penalized for the genes they carry? Scientists' answers could effect a sea change in jurisprudence and redefine justice by contributing to a shift away from historical precedents traditionally used by the courts.
In his Genetics Adjudication Resource Project, Zweig's objectives are to help judges understand the scientific validity of the genetic-based claims that are rushing into the nation's courtrooms and, to the extent possible, avoid the past decade's confusion in adjudicating forensic DNA technologies. The Hon. Pauline Newman is chair of the Advisory and Review Committee for this adjudication project. Judge Newman serves on the U.S. Court of Appeals for the Federal Circuit, Washington, the highest court under the U.S. Supreme Court.
Genome Radio Project: "The DNA Files"
Bari Scott, Matt Binder, and Jude Thilman of the Genome Radio Project discussed the development of a series of hour-long programs exploring genetic issues, to be aired on public radio next year. Plans are to market these audio tapes with supplementary materials, including a WWW site for educators.
The group played lively excerpts from the pilot program, "DNA and Behavior: Is Our Fate Written in Our Genes?" Included were visits to laboratories studying identical twins separated at birth and obesity in mice. The main theme of the pilot, explained Binder, the senior producer, is that a complex interaction of both nature and nurture determines many human traits. Important subthemes include the media's role in creating perceptions about these issues. Behavioral genetics was chosen as the pilot topic to attract a large audience quickly.
The plan is to tie these programs to call-in, question-and-answer radio sessions with scientific community. Scott, who is developing a list of individuals, institutions, and laboratories willing to help out at their local public radio station, welcomes further input from scientists (contact: 510/848-6767, ext. 264; Fax: /883-0311; firstname.lastname@example.org).
Plain-Language Genomics for Adult Science Literacy
Learning about genomics, asserted Maria Sosa [American Association for the Advancement of Science (AAAS)], makes sense for all Americans. The knowledge could affect their health, help them get jobs in a growing field, and even help them with their children's homework. But adults lacking literacy skills are denied access to this information.
Sosa is developing a module, targeted at or above the 6th- to 8th-grade reading level, to provide these underserved people with the background knowledge necessary to understand ELSI issues that may impact their lives. The 2-year project, part of Science + Literacy for Health sponsored by AAAS, will deliver materials to literacy classes, community groups providing health services, and public libraries.
What Should We Teach the Kids?
While "correct" answers to some ELSI questions may not exist, well-reasoned ones begin with a solid understanding of science. Joe McInerney [Biological Sciences Curriculum Study (BSCS)] discussed major challenges to high school biology education that have been crystallized by the Human Genome Project.
BSCS is addressing these educational challenges with three modules funded by the DOE ELSI program. The modules deal with the science and ELSI of the Human Genome Project, the importance of informatics in the project and some related ELSI issues involving genomics databases, and nontraditional mechanisms of inheritance. In the last module, BSCS moves away from the usual genetics curriculum (with examples based on single-gene disorders) to present notions of relative risk, susceptibility, and predisposition. This print module, titled Changing Concepts of Inheritance: Genetics and the Methods of Science, should be available in early 1997. For a free copy of this or the second module (print or computer disk), contact Dee Miller, BSCS; 5415 Mark Dabling Blvd.; Colorado Springs, CO 80918 (Fax: 719/531-9104).
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.