NEW YORK (GenomeWeb News) – Blood samples that are left over from newborn screening tests offer a treasure trove of research materials for scientists seeking to uncover the role of genes in diseases and health, and the science community should be pushing for policies that promote their use in res
A Cogent Research study of 1,000 US residents found decreasing interest in pharmacogenomics applications compared to previous years, while the number of respondents who fear that their genomic data could be used against them is on the rise.
The results of one study indicate that "there is room to improve the clarity of the information provided to customers in their personal genetic test result reports and the way the information is being delivered to them."
The NIH is hoping that its Genetic Testing Registry will serve as a resource for the public to learn about tests and locate laboratories that offer such tests, as well as facilitate data sharing among researchers. But since participation in the registry is voluntary, how will NIH convince test makers to participate?
In a paper published in Public Health Genomics, GPPC emphasizes that the need for a genetic test registry has been exacerbated by the rapid growth in the availability of genetic tests and the marketing of these products directly to consumers.
A California bill, sponsored by 23andMe, would essentially exempt certain personal genomics firms from having to meet CLIA standards, but would create new requirements for the nascent industry. Privacy groups and members of the personalized medicine community are concerned that the bill doesn't go far enough to protect consumers' genetic information or ensure the accuracy of these tests.