title: Trust, vulnerable populations, and genetic data sharing.
abstract: Recent policies and proposed regulations, including the Notice of Proposed Rulemaking for the Common Rule and the 2014 NIH Genetic Data Sharing Policy, seek to improve research subject protections. Protections for subjects whose genetic data is shared are critical to reduce risks such as loss of confidentiality, stigma, and discrimination. In the article 'It depends whose data are being shared: considerations for genomic data sharing policies', Robinson et al. provide a response to our article, 'The Growth and Gaps of Genetic Data Sharing Policies'. Robinson et al. highlight the importance of individual and group preferences. In this article, we extend the conversation on models for improving protections which will mitigate consequences for individuals and groups that are vulnerable to stigma and discrimination.
authors: Department of Bioethics, Cleveland Clinic.
authors: Jalayne J
authors: JJ
authors: Arias
authors: Department of Health Management and Policy, Drexel University School of Public Health.
authors: Genevieve
authors: G
authors: Pham-Kanter
authors: Department of Bioethics, Cleveland Clinic.
authors: Rosa
authors: R
authors: Gonzalez
authors: Massachusetts General Hospital and Harvard Medical School.
authors: Eric G
authors: EG
authors: Campbell
keywords: Data Sharing; genetic; genomic; policy; research; scientific norms