AIM: 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. METHOD: 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. CONCLUSION: 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.
AIM: 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. METHOD: 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. CONCLUSION: 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.
Entities:
Keywords:
access; data sharing; genomic research; public and research participants’ attitudes; public databases
Authors: Saskia C Sanderson; Kyle B Brothers; Nathaniel D Mercaldo; Ellen Wright Clayton; Armand H Matheny Antommaria; Sharon A Aufox; Murray H Brilliant; Diego Campos; David S Carrell; John Connolly; Pat Conway; Stephanie M Fullerton; Nanibaa' A Garrison; Carol R Horowitz; Gail P Jarvik; David Kaufman; Terrie E Kitchner; Rongling Li; Evette J Ludman; Catherine A McCarty; Jennifer B McCormick; Valerie D McManus; Melanie F Myers; Aaron Scrol; Janet L Williams; Martha J Shrubsole; Jonathan S Schildcrout; Maureen E Smith; Ingrid A Holm Journal: Am J Hum Genet Date: 2017-02-09 Impact factor: 11.025
Authors: T G Smith; M E Dunn; K Y Levin; S P Tsakraklides; S A Mitchell; L V van de Poll-Franse; K C Ward; C L Wiggins; X C Wu; M Hurlbert; N K Aaronson Journal: Qual Life Res Date: 2019-08-09 Impact factor: 4.147
Authors: Raymond G De Vries; Tom Tomlinson; H Myra Kim; Chris D Krenz; Kerry A Ryan; Nicole Lehpamer; Scott Y H Kim Journal: Life Sci Soc Policy Date: 2016-03-11