to make complex analyses, to be able to draw conclusions and associations between genotypes and a whole bunch of clinical information."

"It is not just the good of the researcher in this case," added the University of Utah's Ray White, "but it is really the public good that is at stake."

For these reasons, many workshop participants agreed, wherever possible genetic data should be maintained not anonymously but with identification that will allow researchers to get further information on the donors. However, until the extent of the threat of genetic discrimination is known, several participants suggested that modern encryption techniques might offer a way out. Carol Dahl of the National Cancer Institute summed it up this way: "Are there technologies out there that will enable us to encrypt information to allow us to use it in a prospective way for studies in research while protecting that information from incorporation into medical records and from insurance companies gaining access? Clearly encryption is not perfect, but there are industries out there in defense and banking that have spent a lot of money trying to make it as secure as possible." If such encryption technologies were put to work in genetic research, she said, "we might be able to actually protect patients in research studies rather than looking for legislative ways of solving our problems."



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