Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.
Richard MilneKatherine I MorleyMohamed A AlmarriShamim AnwerJerome AtutornuElena E BaranovaPaul BevanMaria CerezoYali CongAlessia CostaChristine CritchleyJosepine FernowPeter GoodhandQurratulain HasanAiko HibinoGry HouelandHeidi C HowardS Zakir HussainCharlotta Ingvoldstad MalmgrenVera L IzhevskayaAleksandra JędrzejakCao JinhongMegumi KimuraErika KleidermanBrandi LeachKeying LiuDeborah MascalzoniÁlvaro MendesJusaku MinariDianne NicolEmilia NiemiecChristine PatchJack PollardBarbara PrainsackMarie RivièreLauren RobartsJonathan RobertsVirginia RomanoHaytham A SheerahJames SmithAlexandra SoulierClaire SteedVigdis StefànsdóttirCornelia TandreAdrian ThorogoodTorsten H VoigtNan WangAnne V WestGo YoshizawaAnna MiddletonPublished in: Genome medicine (2021)
Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.