Potential research participants support the return of raw sequence data
العنوان: | Potential research participants support the return of raw sequence data |
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المؤلفون: | Michael Parker, Helen V. Firth, Anna Middleton, Katherine I. Morley, Caroline F. Wright, Eugene Bragin, Matthew E. Hurles |
المصدر: | Journal of Medical Genetics |
بيانات النشر: | BMJ, 2015. |
سنة النشر: | 2015 |
مصطلحات موضوعية: | Genetic Research, Process (engineering), Genomic research, Molecular Sequence Data, Internet privacy, Genomics, 03 medical and health sciences, Health services, Data sequences, Getting Research into Practice, Diagnosis, Genetics, Humans, Genome-wide, Genetics (clinical), 030304 developmental biology, Ethics, Patient Access to Records, 0303 health sciences, Data collection, Health professionals, Genome, Human, business.industry, Data Collection, 030305 genetics & heredity, Ethics and Policy, Clinical value, business, Psychology |
الوصف: | Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from |
تدمد: | 1468-6244 0022-2593 |
الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::59fcb5dff04c47d7dacb7a0bd8c34ec1Test https://doi.org/10.1136/jmedgenet-2015-103119Test |
حقوق: | OPEN |
رقم الانضمام: | edsair.doi.dedup.....59fcb5dff04c47d7dacb7a0bd8c34ec1 |
قاعدة البيانات: | OpenAIRE |
تدمد: | 14686244 00222593 |
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