Published in
BMJ Publishing Group, Journal of Medical Genetics, 8(52), p. 571-574, 2015
DOI: 10.1136/jmedgenet-2015-103119
Links
- ORCID
- BMJ Publishing Group
- [www.ncbi.nlm.nih.gov] | PDF
- [europepmc.org] | PDF
- [www.researchgate.net] | PDF
- [www.ncbi.nlm.nih.gov] | PDF
- [www.ncbi.nlm.nih.gov] | PDF
Tools
Potential research participants support the return of raw sequence data
,
Caroline F. Wright,
Katherine I. Morley ,
Eugene Bragin,
Helen V. Firth,
Matthew E. Hurles,
Michael Parker
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Abstract
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