Charles N. Rotimi|Patricia A. Marshall
Tailoring the process of informed consent in genetic and genomic research
National Human Genome Research Institute|National Institutes of Health|Case Western Reserve University
genomic science associated technologies facilitating unprecedented rate discovery novel insights relationship human genetic variation health willingness large numbers individuals different ethnic cultural backgrounds donate biological samples one major factors behind success ongoing genomic revolution although current informed consent documents processes demonstrate commitment ensuring study participants well informed risks benefits participating genomic studies continues need develop effective new approaches adequately informing participants changing complexities scientific ethical issues arise conduct genomics research examples complexities genomic research include widespread use wholegenome sequencing technologies broad sharing individuallevel data evolving information technology growing demand return genetic results participants changing attitudes privacy expansion genomics studies global populations representing diverse cultural linguistic socioeconomic backgrounds highlight briefly discuss importance ten core scientific cultural social factors particularly relevant tailoring informed consent genomic research draw attention need informed consent document process responsive evolving nature genomic research