Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Some 300 scientists, journalists, and teachers attended the December 3, 1994, conference on "Genes that Make News, News that Makes Genes: Reporting on Complex Traits." The meeting, partially funded by DOE, was the fourth in a series of Science and Journalism conferences organized by the Genetic Screening Study Group (Boston) to explore relationships between science and the media. Discussion panels focusing on cancer, sexuality, and violence and aggression addressed challenges in communicating information about genetic research that might have important societal repercussions.
In his keynote address, Francis Collins (NIH National Center for Human Genome Research) spoke of issues requiring public input and called for clinical trials to evaluate social and personal burdens of genetic information.
Cancer panelists discussed potential benefits and harms of predictive testing, public expectations about human genome research, and the roles of scientists and the press in generating those expectations. Fred Li (Dana Farber Cancer Institute) pointed out the need to consider predictive cancer testing as research, address issues in testing children, and undertake public education. He recommended that general population screening not be done and stressed the importance of assessing carefully the usefulness of any predictive test and of providing counseling both before and after testing.
Neil Holtzman (Johns Hopkins University School of Medicine) expressed his belief that press coverage of genetic discoveries has generated unrealistic public expectations. He blamed some of these problems on journalists' esteem for scientists and suggested they use an investigative reporting model.
Sandra Steingraber (Women's Community Cancer Project) noted that focusing on cancer's hereditary aspects may allow people to maintain emotional distance from victims. The media reinforce this attitude by underplaying possible environmental factors in disease development. Laurie Garrett (Newsday) observed that most people do not understand gene function and view new developments with a mixture of fear and optimism. She called for accuracy in reporting but acknowledged many constraints on journalists, including space, time, and the necessity to sell a product.
The panel on human sexuality focused largely on press coverage of a possible genetic basis for homosexuality. Dean Hamer (National Cancer Institute) described measures taken by his group to encourage responsible reporting of their study linking some male homosexuality to the X chromosome. William Byne (Mount Sinai Medical School) pointed out that views critical of research into the biological basis of sexuality were not reported adequately. Chandler Burr, freelance writer, found that reporters and scientists tend to sensationalize and oversimplify discoveries, an opinion shared by several other speakers.
During the panel discussion on aggression and violence, Xandra Breakefield [Harvard Medical School (HMS)] expressed dismay over inaccurate reporting of her study examining correlations between monoamine oxidase deficiency and aggressive or violent behavior. Gregory Carey (University of Colorado) discussed difficulties and limitations in twin and adoption studies exploring genetic factors in violent behavior. He and others argued strongly against dichotomizing nature and nurture in these analyses.
Joseph Alper (University of Massachusetts, Boston) criticized scientists and journalists for overstating findings in monoamine oxidase studies and in research relating serotonin levels and aggressive behavior. Felton Earls [Harvard School of Public Health (HSPH)] described a longitudinal study to identify social, economic, and biomedical factors that might correlate with violent behavior. Freelance writer Susan Ince observed that the lack of scientific criticism in press coverage creates the impression that there is none. She also offered the opinion that some researchers may be promoting their own social agenda.
Jonathan Beckwith (HMS), David Smith (DOE Office of Health and Environmental Research), and B.D. Colen (HMS) summarized the conference from their perspectives as scientist, scientist/administrator, and journalist, respectively. Some common themes included a growing concern over raising false public expectations about predictive genetic screening and the importance of emphasizing gene-environment interaction. Attendees generally agreed that both scientists and journalists must assume greater responsibility in promoting accurate reporting.
Jonathan Beckwith and Lisa Geller (HMS) and Kathleen Glass (HSPH)
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v6n6).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.