Personal Genomes: When consent gets in the way Export

@article{citeulike:3483843, abstract = {[Excerpt:] Translating genomic research into health care improvements will require linking genotypes with medical information that has long been considered private. Fortuitously, as genomics has progressed, so too have electronic medical records, including personal health records that are now an important part of the electronic medical information system1. Accompanying these developments, however, is an argument, advocated in the US Congress and elsewhere, that biomedical ethics requires subjecting any uses of electronic medical records to patient consent. ... Although well-intentioned, such arguments spell trouble. Linked data are crucial for research and improving health-care quality. People might fear that information will be revealed or misused, but the impulse to block all access in the absence of consent is mistaken.}, author = {Taylor, Patrick}, citeulike-article-id = {3483843}, citeulike-linkout-0 = {http://dx.doi.org/10.1038/456032a}, citeulike-linkout-1 = {http://dx.doi.org/10.1038/456032a}, citeulike-linkout-2 = {http://view.ncbi.nlm.nih.gov/pubmed/18987719}, citeulike-linkout-3 = {http://www.hubmed.org/display.cgi?uids=18987719}, day = {6}, doi = {10.1038/456032a}, journal = {Nature}, keywords = {autonomy, comment, genomics, informed-consent, personal-genomics}, month = {November}, number = {7218}, pages = {32--33}, posted-at = {2008-12-01 13:17:39}, priority = {2}, publisher = {Nature Publishing Group}, title = {Personal Genomes: When consent gets in the way}, url = {http://dx.doi.org/10.1038/456032a}, volume = {456}, year = {2008} }

TY - JOUR ID - citeulike:3483843 L3 - citeulike-article-id:3483843 N2 - [Excerpt:] Translating genomic research into health care improvements will require linking genotypes with medical information that has long been considered private. Fortuitously, as genomics has progressed, so too have electronic medical records, including personal health records that are now an important part of the electronic medical information system1. Accompanying these developments, however, is an argument, advocated in the US Congress and elsewhere, that biomedical ethics requires subjecting any uses of electronic medical records to patient consent. ... Although well-intentioned, such arguments spell trouble. Linked data are crucial for research and improving health-care quality. People might fear that information will be revealed or misused, but the impulse to block all access in the absence of consent is mistaken. IS - 7218 JF - Nature EP - 33 TI - Personal Genomes: When consent gets in the way PB - Nature Publishing Group VL - 456 SP - 32 KW - autonomy KW - comment KW - genomics KW - informed-consent KW - personal-genomics AU - Taylor, Patrick PY - 2008/11/06/ UR - http://dx.doi.org/10.1038/456032a ER -