Policy ForumData Privacy

Myriad take two: Can genomic databases remain secret?

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Science  12 May 2017:
Vol. 356, Issue 6338, pp. 586-587
DOI: 10.1126/science.aal3224

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Summary

An ongoing legal challenge to the business model of Myriad Genetics highlights how recent policy developments have contributed to a collision between individual interests in access to personal health data and commercial interests in trade secrecy. Following a landmark ruling by the U.S. Supreme Court invalidating its patents on BRCA1/2 genetic variants (1), which increase the risk of female breast and ovarian cancer, Myriad now faces efforts to dismantle the proprietary database of variants and their clinical interpretation that it began developing when it was the exclusive provider of BRCA1/2 tests. Although the competing claims that anchor this dispute are hard to reconcile, we see room for legal compromise and opportunity for policy innovations to incentivize companies to invest in test development while ensuring that their findings can be used by others.