of how much clinical research is actually being done on patients with non-IRB approved protocols. I don't know."

If private companies and non-profit organizations are to conduct genetic research, some workshop participants said, they should hold their researchers to the same standards that federally funded scientists are held to, and that implies review by IRBs or something comparable. "I think that it is incumbent upon the industry to do its own homework," Handelin said, "and I would hope that that can be done in the absence of new and burdensome regulations, that industry gets it together to take a much clearer look at the need for external review of research protocols that are being conducted by and funded by companies. I think that this industry actually should be held to a higher ethical standard than many other industries because we deal in and are given the privilege of dealing in some of the most vulnerable aspects of our society."

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