title: Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review.
abstract: OBJECTIVE
  Introducing data sharing practices into the genomic research arena has challenged the current mechanisms established to protect rights of individuals and triggered policy considerations. To inform such policy deliberations, soliciting public and research participants' attitudes with respect to genomic data sharing is a necessity.
  
  
  METHODS
  The main electronic databases were searched in order to retrieve empirical studies, investigating the attitudes of research participants and the public towards genomic data sharing through public databases.
  
  
  RESULTS
  In the 15 included studies, participants' attitudes towards genomic data sharing revealed the influence of a constellation of interrelated factors, including the personal perceptions of controllability and sensitivity of data, potential risks and benefits of data sharing at individual and social level and also governance level considerations.
  
  
  CONCLUSIONS
  This analysis indicates that future policy responses and recruitment practices should be attentive to a wide variety of concerns in order to promote both responsible and progressive research.
authors.affiliation: Department of Public Health and Primary Care, University of Leuven, Kapucijnenvoer 35 BOX 7001, B-3000 Leuven, Belgium.
authors.forename: Mahsa
authors.initials: M
authors.lastname: Shabani
authors.forename: Louise
authors.initials: L
authors.lastname: Bezuidenhout
authors.forename: Pascal
authors.initials: P
authors.lastname: Borry
mesh_terms: D001291:Attitude of Health Personnel; D003219:Confidentiality; D023281:Genomics; D006282:Health Personnel; D006801:Humans; D033181:Information Dissemination; D010465:Perception; D011639:Public Opinion; D012106:Research; D012307:Risk Factors
keywords: access; data sharing; genomic research; public and research participants’ attitudes; public databases