The next controversy in genetic testing: Clinical data as trade secrets?

Robert Cook-Deegan, John M. Conley, James P. Evans, Daniel Vorhaus

    Research output: Contribution to journalArticle

    67 Scopus citations


    Sole-source business models for genetic testing can create private databases containing information vital to interpreting the clinical significance of human genetic variations. But incomplete access to those databases threatens to impede the clinical interpretation of genomic medicine. National health systems and insurers, regulators, researchers, providers and patients all have a strong interest in ensuring broad access to information about the clinical significance of variants discovered through genetic testing. They can create incentives for sharing data and interpretive algorithms in several ways, including: promoting voluntary sharing; requiring laboratories to share as a condition of payment for or regulatory approval of laboratory services; establishing - and compelling participation in - resources that capture the information needed to interpret the data independent of company policies; and paying for sharing and interpretation in addition to paying for the test itself. US policies have failed to address the data-sharing issue. The entry of new and established firms into the European genetic testing market presents an opportunity to correct this failure.

    Original languageEnglish (US)
    Pages (from-to)585-588
    Number of pages4
    JournalEuropean Journal of Human Genetics
    Issue number6
    StatePublished - Jun 1 2013

    ASJC Scopus subject areas

    • Genetics
    • Genetics(clinical)

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