title: NCI think tank concerning the identifiability of biospecimens and "omic" data.
abstract: OBJECTIVE
  On 11 and 12 June 2012, the National Cancer Institute hosted a think tank concerning the identifiability of biospecimens and "omic" data in order to explore challenges surrounding this complex and multifaceted topic.
  
  
  METHODS
  The think tank brought together 46 leaders from several fields, including cancer genomics, bioinformatics, human subject protection, patient advocacy, and commercial genetics.
  
  
  RESULTS
  The first day involved presentations regarding the state of the science of reidentification; current and proposed regulatory frameworks for assessing identifiability; developments in law, industry, and biotechnology; and the expectations of patients and research participants. The second day was spent by think tank participants in small breakout groups designed to address specific subtopics under the umbrella issue of identifiability, including considerations for the development of best practices for data sharing and consent, and targeted opportunities for further empirical research.
  
  
  CONCLUSIONS
  We describe the outcomes of this 2-day meeting, including two complementary themes that emerged from moderated discussions following the presentations on day 1, and ideas presented for further empirical research to discern the preferences and concerns of research participants about data sharing and individual identifiability.
authors.affiliation: Diagnostics Evaluation Branch, Cancer Diagnosis Program, Division of Cancer Treatment and Diagnosis, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Carol J
authors.initials: CJ
authors.lastname: Weil
authors.forename: Leah E
authors.initials: LE
authors.lastname: Mechanic
authors.forename: Tiffany
authors.initials: T
authors.lastname: Green
authors.forename: Christopher
authors.initials: C
authors.lastname: Kinsinger
authors.forename: Nicole C
authors.initials: NC
authors.lastname: Lockhart
authors.forename: Stefanie A
authors.initials: SA
authors.lastname: Nelson
authors.forename: Laura L
authors.initials: LL
authors.lastname: Rodriguez
authors.forename: Laura D
authors.initials: LD
authors.lastname: Buccini
mesh_terms: D003219:Confidentiality; D030661:Genetic Privacy; D023281:Genomics; D006801:Humans; D033181:Information Dissemination; D054547:National Cancer Institute (U.S.); D010344:Patient Advocacy; D014481:United States