APPLaUD: access for patients and participants to individual level uninterpreted genomic data.

作者: Adrian Thorogood , Jason Bobe , Barbara Prainsack , Anna Middleton , Erick Scott

DOI: 10.1186/S40246-018-0139-5

关键词: Genomic sequencingIndividual levelParticipatory action researchPsychologyData sequencesGenomic dataCurrent practiceCitizen scienceGenetic testingInternet privacy

摘要: There is a growing support for the stance that patients and research participants should have better easier access to their raw (uninterpreted) genomic sequence data in both clinical contexts. We review legal frameworks literature on benefits, risks, practical barriers of providing individuals data. also survey sequencing initiatives provide or plan individual access. Many expect be able health Individuals right some countries Moreover, increasing numbers participatory projects, direct-to-consumer genetic testing companies, now major national grant upon request. Drawing current practice regulatory analysis, we outline legal, ethical, guidance seeking offer interested

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