APPLaUD: access for patients and participants to individual level uninterpreted genomic data
| العنوان: | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
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| المؤلفون: | Jason Bobe, Laura Lyman Rodriguez, Madeleine J Murtagh, Natasha Bonhomme, Adrian Thorogood, Anna Middleton, Barbara Prainsack, Erick R. Scott, Manuel Corpas, Sarah C. Nelson, Erika Kleiderman |
| المساهمون: | Thorogood, Adrian [0000-0001-5078-8164], Apollo - University of Cambridge Repository |
| المصدر: | Human Genomics Human Genomics, Vol 12, Iss 1, Pp 1-6 (2018) |
| سنة النشر: | 2017 |
| مصطلحات موضوعية: | 0301 basic medicine, lcsh:QH426-470, Patients, Genomic data, Internet privacy, Patient engagement, lcsh:Medicine, Participatory action research, Review, 030105 genetics & heredity, Citizen science, Ethics, Research, 03 medical and health sciences, Data sequences, Drug Discovery, Genetics, medicine, Humans, Genetic Testing, Molecular Biology, Genetic testing, Ethics, medicine.diagnostic_test, Base Sequence, business.industry, Genome, Human, Genomic sequencing, Research, lcsh:R, Raw genomic data, Genomics, Individual level, 3. Good health, lcsh:Genetics, 030104 developmental biology, Current practice, Privacy, Whole genome sequencing, Molecular Medicine, Psychology, business, Individual access, Law, Direct-to-consumer |
| الوصف: | Background There is a growing support for the stance that patients and research participants should have better and easier access to their raw (uninterpreted) genomic sequence data in both clinical and research contexts. Main body We review legal frameworks and literature on the benefits, risks, and practical barriers of providing individuals access to their data. We also survey genomic sequencing initiatives that provide or plan to provide individual access. Many patients and research participants expect to be able to access their health and genomic data. Individuals have a legal right to access their genomic data in some countries and contexts. Moreover, increasing numbers of participatory research projects, direct-to-consumer genetic testing companies, and now major national sequencing initiatives grant individuals access to their genomic sequence data upon request. Conclusion Drawing on current practice and regulatory analysis, we outline legal, ethical, and practical guidance for genomic sequencing initiatives seeking to offer interested patients and participants access to their raw genomic data. |
| وصف الملف: | application/pdf |
| تدمد: | 1479-7364 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e61c0e5647dec452ed00ea9765040cc0Test https://pubmed.ncbi.nlm.nih.gov/29454384Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....e61c0e5647dec452ed00ea9765040cc0 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 14797364 |
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