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About Personal Genomics


Direct-to-consumer genetic testing is an emerging, highly publicized industry, despite considerable skepticism among experts. Advances in sequencing and genomics have revealed some correlations between particular genetic sequences and certain diseases, physical characteristics, and behaviors, though these relationships are not perfectly understood. Nevertheless, entrepreneurs have seized on these correlations to sell tests that purport to indicate whether the customer has an increased risk of a disease or other characteristic. Similarly, associations of genetic sequences with specific geographical locations have led to commercial “ancestry tests.”

Evaluating the claims of these companies is difficult, since their technologies are typically kept private and there is minimal oversight. Medical tests are supposed to be supervised by a physician, and testing laboratories need to be licensed. California has worked with Navigenics and 23andMe, two of the best-known companies, to ensure that they are operating legally in the state, but these Internet-based businesses raise regulatory concerns that cross state boundaries.

This industry may contribute to an over-emphasis on genes as determinants, possibly at the expense of environmental, economic and social considerations. A further concern is the possible use of DNA databases developed by private companies, whose business plans include profiting from the compiled data. Finally, although the companies insist that they will respect the privacy of their customers, there is no effective guarantee.



Astronaut Twins Study Raises Questions About Genetic Privacyby Alexandra WitzeNatureMarch 26th, 2015Researchers will gather reams of genomic and other data on NASA astronaut Scott Kelly and compare it to his Earth-dwelling identical twin, but the results may never be published if they discover sensitive medical information.
Gene Counsellors Expect Resurgence of 'Jolie Effect'by Erika Check HaydenNatureMarch 26th, 2015But misinterpreted results of tests for cancer risk can result in unnecessary surgery.
Precision Medicine is Coming, But Not Anytime Soonby Beverly MerzHarvard Health BlogMarch 26th, 2015New tests and treatments won’t leap directly from the lab to the clinic. The Precision Medicine Initiative also calls for a new regulatory framework to make sure that technologies aren’t launched before they’ve been proven to be safe and effective.
165,000 Engagements End Due to ‘Genetic Incompatibilities’by Hussain Hazzazi and Ayman Al-SaidalaniSaudi GazetteMarch 24th, 2015In Saudi Arabia, health checkups are mandatory for engaged couples before they get married. The program aims to reduce the risk of having children with any blood or gastronomical diseases.
These Are All the Things That Could Go Wrong with 23andMe's Drug Development[Quotes CGS's Marcy Darnovsky]by Kari PaulMotherboardMarch 19th, 201523andMe announced plans to use its massive DNA database to develop new medical treatments, but experts question what that means for the people who have submitted their data to the company.
Public interest group condemns human germline modification efforts, supports research moratorium, calls for US prohibition[Press Statement]March 19th, 2015We're at a watershed moment in determining whether human genetic technologies will be used in the public interest and for the common good, or in ways that are dangerous and socially pernicious.
Universal Newborn Genome Sequencing and Generation Alphaby Ricki Lewis, Biopolitical Times guest contributorMarch 16th, 2015What might the future look like, as whole-genome sequencing of newborns ramps up?
California and your DNA: Is it a healthy relationship? by Jessica CussinsBiopolitical TimesMarch 16th, 2015While every state across the country takes part in newborn screening, each state differs in how it handles the blood cards and the genetic information they hold. In California, those cards are stored indefinitely and potentially rented out for a broad array of uses.
How Identity Evolves in the Age of Genetic Imperialismby Eleonore Pauwels and Jim DratwaScientific AmericanMarch 13th, 2015The Silicon Valley brand of genetic determinism tells us there is a gene-hack to solve every “problem” — that DNA is just a code to personalize at will.
Get Genetic Testing and Cheat the System?by Robert KlitzmanCNNMarch 13th, 2015Many people undergo genetic testing on their own and pay out of pocket, allowing them to keep the result to themselves.
23andMe Adds On: More About The Gene-Test Maker’s Drug R&D Ambitionsby Alex LashXconomyMarch 12th, 2015"We definitely think genetics should be married with all the other info being tracked. That will come in time."
23andMe to Use Genetic Database for Drug Discoveryby Ron WinslowWall Street JournalMarch 12th, 201523andMe's new therapeutics group, led by a star drug developer, will have "the opportunity to look broadly through the database and not have a particular restriction to what we’re looking for."
Privacy and the 100,000 Genome Projectby Edward Hockings and Lewis CoyneThe GuardianMarch 10th, 2015As the Department of Health starts to draw a map of thousands of genomes, will it keep its promise to anonymize our data?
Genetic Testing Ads Not Telling the Whole Story, Study Saysby Sabriya RiceModern HealthcareMarch 6th, 2015"There are very important limitations...but they are not widely reported on websites that market personalized cancer care."
Pregnant Women Are Finding Out They Have Cancer From A Genetic Test Of Their Babiesby Virginia HughesBuzzFeedMarch 5th, 2015When it comes to prenatal tests, it’s not clear whether incidental findings have clear-cut diagnostic value. And false positives might spur a pregnant woman to go through unnecessary medical procedures.
Supreme Court Gives Tacit Approval for Government to Take Anybody’s DNAby David KravetsArs TechnicaMarch 2nd, 2015The Supreme Court has let stand the conviction of a rapist whose prosecution rested on DNA swiped from the armrests of an interrogation-room chair.
23andMe’s Dangerous Business Modelby Marcy DarnovskyThe New York TimesMarch 2nd, 2015Handing over reams of our genetic, health and personal information to companies like 23andMe – and paying them for the privilege – is far from the only path to scientific advance.
Anne Wojcicki’s Quest to Put People in Charge of Their Own Health[Quotes CGS's Marcy Darnovsky]by Stephanie LeeSan Francisco ChronicleFebruary 28th, 201523andMe has attracted nearly a million customers and more than $126 million in venture capital, but not everyone thinks it should be the one to collect their data.
Building a Face, and a Case, on DNAby Andrew PollackThe New York TimesFebruary 23rd, 2015Rather than an artist’s rendering based on witness descriptions, the face was generated by a computer relying solely on DNA found at the scene of the crime.
The 23andMe Experience - A Lot of Knowledge is of Little Help?by Alison LashwoodBioNewsFebruary 23rd, 2015Those in favour see direct-to-consumer genetic tests as a way of engaging the public with science and making it fun, but there are problematic aspects, too.
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