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ness of the DNA libraries. Being mainly from staffers at genome laboratories, might the selection of DNA be seen as elitist? Would some people wonder why there were three men and only one woman contributing DNA? Was the set of donors diverse enough? "There was sensitivity to how it would be publicly perceived, who was selected," said Raymond White from the University of Utah.
So the choice was made to work out an agreement between DOE and NIH for such libraries and to phase out use of those with known donors. "It was painful," recalls Tilghman, who served on the council that made the decision. But it seemed necessary to get fully informed consent from the donors and make sure that their identities remained secret.
Pieter de Jong of the Roswell park Cancer Institute in Buffalo, New York, described the process for collecting a new set of DNA. Advertising in Buffalo in newspapers and on radio, he and his colleagues attracted five or six hundred willing donors. They took the first ten male and ten female volunteers who were okayed by genetic counselors. Each of the twenty gave a blood sample and was paid a small amount of money—in cash, so there would be no paper trail leading to the donor. "The blood samples entered into my laboratory with a number on them rather than a name," de Jong said. "Numbers were taken off and replaced by our own lab numbers. No records were kept about this correlation, so there was no way for us to go back to knowing which twenty people they were." Then two donors, one male and one female, were selected at random to supply the DNA to make the libraries of DNA clones. The only record of who took part in the study is twenty sealed envelopes, each containing a consent form with the signature of one of the donors. The result of all this secrecy is that it would be practically impossible for anyone, even the researchers, to learn whose DNA was analyzed for the Human Genome Project. "The best chance of revealing the identity of the donors is through the donors themselves," de Jong said. "They know they have a 10 percent chance that they eventually were the people who delivered the blueprint which is part of the genetic database.''
As this tale illustrates, the field of genome research is still so new that researchers sometimes find themselves making up the rules as they go along. Many of the issues that genome researchers face are either not covered at all under existing policies or else are regulated by policies that were intended for very different sorts of research and are not appropriate for genome work. More specific standards will need to be developed to deal with dilemmas created by the new genetic technologies.
Consider, for example, the difficulties that genome researchers face in trying to comply with the Privacy Act of 1974. The Act forbids government agencies (and their researchers) from maintaining secret files of any type on individuals, noted Sherri Bale, a genetic researcher at the National Institute of Arthritis, Musculoskeletal and Skin Diseases, but genetic research demands a certain amount of discreteness. "We are supposed to allow people to see the records kept