THOUGH ELSI's hands may often be tied, it's at least succeeded in flushing many geneticists out of their labs to consider the consequences of their work. Francis Collins, the University of Michigan molecular geneticist who took over the genome project in 1993, has shown deep interest in ELSI issues. He created the on-site ELSI program at NIH, for example. And he appears truly anguished by the gap between the powerful diagnostic tests that can detect future diseases and the limited range of therapies that can avert them¬a gap that means abortion, which Collins, a devout Christian, opposes on religious grounds, is often the only preventive option when an embryo shows a serious genetic defect. While Watson's strategy was to throw money at the ELSI types and then largely ignore them, Collins has increasingly taken ELSI issues under his wing.
In fact, the education of Francis Collins might be listed among the successes of ELSI. Annas, who sat on a panel of the American College of Human Geneticists with Collins in 1993, recalls that at the time, Collins was urging blanket screening of all women for the breast cancer gene, which Collins the laboratory scientist had helped track down. But recently Collins has come out against companies that are trying to commercialize breast cancer tests. "I'm quite concerned that we don't yet have enough information" about the usefulness of the tests, he told Science this past October. Later this year, a task force panel, using data from scientific consortia funded by ELSI, is supposed to finalize recommendations about how and when the tests for various cancers and cystic fibrosis should be used. A few companies, among them Myriad Genetic Laboratories of Salt Lake City, are rushing ahead to market cancer tests, but most have agreed to follow ELSI-established protocols. "We don't market products without clinical evidence behind them," says Evan Jones, chairman of Digene Corporation, a Beltsville, Maryland, biotech firm.
But even Collins ultimately clashed with ELSI's activist agenda. Last April, a dispute over a proposed ELSI study on the volatile link between genes and behavior led to the resignation of Working Group chair Lori Andrews, a law professor at Chicago-Kent College of Law. (Andrews, whose research is currently funded by an ELSI grant, refuses to comment on the affair.) For several months, Dorothy Nelkin and other Working Group members had been seeking $25,000 to commission a critical review of the literature on behavioral genetics. Nelkin felt research in the field had helped distort popular understanding and contributed to a vogue for genetic determinism in criminology. An ELSI study, she concluded, might help clear the air.
But from the start, Collins rejected the idea. In public, he said there was no money; critics contend that he was simply reluctant to fund a debunking project that was likely to inflame the many practitioners of behavior genetics. When Andrews quit, apparently in protest of Collins's decision, Collins responded by commissioning a panel to thoroughly review ELSI's mandate. As he told Science, "There was some uncertainty on the Working Group itself...about what exactly its mission was." The conclusions of the seven-month review, released in December, spelled out big future changes for ELSI. The panel unanimously recommended that the Working Group be split in two, with one group overseeing extramural grants and another¬the policy panel¬answering to Health and Human Services Secretary Donna Shalala rather than to Collins. Was Collins simply trying to get ELSI off his back? Perhaps. But by pushing the Working Group up the bureaucratic ladder, Collins may finally be giving some teeth to the ELSI agenda.