Conflict flares over incidental genetic findings


Should people who volunteer for genomic studies be told about unrelated disease mutations that turn up in their sequence data? The decadeslong debate about such “incidental findings,” which can include genes that boost risk for cancer or heart disease, flared up again last week after bioethicists at the National Institutes of Health published a study showing many participants who at first refuse those findings can change their minds. Controversially, it went on to suggest all research participants routinely be told about their genetic risks for conditions that can be prevented or treated—a change from current practice. The controversy pits some researchers who see incidental findings as an opportunity to boost the health of the millions of participants in genetics research against others, mainly bioethicists, who stress the need to respect study participants’ right to reject such information. Deepening the divide, the study showed Black participants were more likely to refuse incidental results.

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