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Return of genomic results does not motivate intent to participate in research f...
Milne, R; Morley, KI; Almarri, MA; Atutornu, J; Baranova, EE; Bevan, P; Cerezo, M; Cong, Y; Costa, A; Feijao, C; de Freitas, C; Fernow, J; Goodhand, PPurpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded w...
Demonstrating trustworthiness when collecting and sharing genomic data: public ...
Milne, R; Morley, KI; Almarri, MA; Anwer, S; Atutornu, J; Baranova, EE; Bevan, P; Cerezo, M; Cong, Y; Costa, A; Critchley, C; Fernow, J; Goodhand, PBackground: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods: We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing inclu...
The challenges of the expanded availability of genomic information: an agenda-s...
Borry, P; Bentzen, H; Budin-Ljøsne, I; Cornel, M; Howard, H; Feeney, O; Jackson, L; Mascalzoni, D; Mendes, A; Peterlin, B; Riso, B; Shabani, MRapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals’ direct access to their genomic data. The...