TechCrunch: California Senator proposes tighter regulations on direct-to-consumer genetics testing companies. “A state senator in California is introducing legislation designed to provide more oversight over direct-to-consumer genetic testing companies. The new regulations, introduced by Santa Ana’s Democratic Senator Thomas Umberg, builds on attempts in the California Consumer Privacy Act to regulate the ways data collected from genetic testing can be used by companies.”
Route Fifty: Finding History Along the Highway. “A one-inch grey pipe stem excavated by Maryland state archeologists doesn’t look like much. But this artifact dug up on a site near a rural stretch of highway eventually led to an important clue about the lives of enslaved people in the state about 200 years ago. DNA found inside the stem was identified as belonging to a woman and linked to people currently living in Sierra Leone—a rare breakthrough in using genetic testing to uncover the history of people divorced from their homelands in West Africa when forced onto slave ships.”
Purdue University: Genetic testing has a data problem. New software can help.. “In recent years, the market for direct-to-consumer genetic testing has exploded. The number of people who used at-home DNA tests more than doubled in 2017, most of them in the U.S. About 1 in 25 American adults now know where their ancestors came from, thanks to companies like AncestryDNA and 23andMe. As the tests become more popular, these companies are grappling with how to store all the accumulating data and how to process results quickly. A new tool called TeraPCA, created by researchers at Purdue University, is now available to help. The results were published in the journal Bioinformatics.”
Quartz: Everyday people can now map their genomes and maybe keep their privacy. “For the first time, a company is offering a direct-to-consumer tool that can map out a person’s entire genome. The service, which is run by Nebula Genomics, is a double-edged sword, though. On the one hand it can help a person search through a broad array of their genetic code to find disease-related genes. On the other, the company faces the herculean task of carefully walking the ethical line around keeping people’s data private.”
New York Times: Are Genetic Testing Sites the New Social Networks?. “Three years ago Dyan deNapoli, a 57-year-old author and TED speaker who specializes in penguins, was given a 23andMe genetic testing kit for her birthday. Intrigued, she spit in the tube and sent the results to a lab in Burlington, N.C. About two months later she received a pie chart breaking down where her ancestors lived (99.4 percent of them were from Europe). What she was most giddy about, however, was a 41-page list of all the people who had done the test and were genetically related to her: 1,200 in all.”
Futuristechinfo: We need a secure anonymous open access genetic database for researchers. “…genetic data banks amassed by private companies don’t necessarily have to follow the same regulations regarding access to their data that federally funded researchers do. And a recent proposal to change consent regulations for human research may make it cheaper for private companies to collect and use this data than public ones. As bioethicists (myself included) have warned, we need to pay attention to concerns about how these private genetic data banks are used and accessed before we enable a system where the future of public genetic research lies in private hands.”
ECRI Institute has launched a new database of genetic tests (PRESS RELEASE). “The struggle is real: with more than 60,000 genetic tests available, payers and providers have a tough time sorting through which ones are worthwhile. Today, ECRI Institute introduces its revolutionary new service, ECRIgene™, a dynamic, searchable knowledge base of the genetic tests that matter most….ECRIgene gives fast access to test descriptions and purposes, gene(s) comprising each test or panel, and the diseases and conditions targeted by each test.” As you might imagine, this resource is not free.