Consent in Building the Precision Medicine Initiative Cohort

Consent in Building the Precision Medicine Initiative Cohort

Consent in Building the Precision Medicine Initiative Cohort

Executive Summary

The Precision Medicine Initiative (PMI) is an ambitious project that aims to build a longitudinal cohort representative of the American population by collecting samples and data from one million participants. As currently planned, these individuals would be recruited by selected partner health-provider organizations (HPOs) or through other types of recruitment sites where ...volunteers would be recruited directly. Given that the effort was launched recently, there are ongoing announcements by funding agencies presenting key collaborating institutes and partners. Since the PMI aims to recruit participants as early as 2017, addressing issues related to consent becomes crucial, including the medium used to document consent and the content and language employed in consent forms. In this context, this report aims to provide an overview of the issues related to consent and relevant to building the PMI cohort. Several recommendations are provided to guide the cohort development and ensure alignment with existing international initiatives

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