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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.



Personal Responsibilityby EditorialNatureSeptember 1st, 2015The US Precision Medicine Initiative needs to tread carefully when revealing health and genetic data to participants.
Giant study poses DNA data-sharing dilemmaby Sara ReardonNature NewsSeptember 1st, 2015As the US Precision Medicine Initiative pushes forward, whether to provide sequenced genetic information to biobank donors is an unresolved question of ethics, privacy, and medical utility.
Debate Ensues as Prenatal Tests Reach Beyond Down Syndromeby Antonio RegaladoMIT Technology ReviewAugust 31st, 2015Doctors and genetic counselors question the expanding scope of blood tests during pregnancy.
The Risks of Turning Races Into Genes by Matthew W. HugheyThe Huffington PostAugust 20th, 2015"Race" is man-made, and much of the scientific enterprise has traditionally supported the myth that racial differences accurately represent real, biological differences among humans.
Inside Illumina’s Plans to Lure Consumers with an App Store for Genomes by Antonio RegaladoMIT Technology ReviewAugust 19th, 2015The head of the largest gene-sequencing company envisions holding your DNA, then selling it to you little by little.
B.C. Company to Launch DNA Testing Service by Pamela FayermanVancouver SunAugust 19th, 2015Scrutiny by government and College of Physicians and Surgeons being considered.
We Might Not Want to Know the Dark Secrets Lurking in Our Genesby Kevin LoriaTech InsiderAugust 17th, 2015Once we're good enough at reading a DNA sequence to really interpret all the results — rather than just glean a few hints here and there — we may not want to know the answers.
‘Scientific Ambitions Behind DNA Profiling Bill’by Vidya VenkatThe HinduAugust 16th, 2015Legal researcher Usha Ramanathan speaks about the the modified draft Bill which continues to raise several critical concerns relating to privacy, ethical usage of DNA samples and DNA database.
Cold Caseby Anne Fausto-SterlingBoston ReviewAugust 11th, 2015Artist Heather Dewey-Hagborg likes to make faces. But she doesn’t paint or sculpt them, precisely. She doesn’t even decide what they look like.
Public Health in the Precision-Medicine Eraby Ronald Bayer, Ph.D. & Sandro Galea, M.D., Dr.P.H.New England Journal of MedicineAugust 6th, 2015"In many ways the American health care system is the most advanced in the world. But whiz-bang technology just cannot fix what ails us.”
Four Problems with the DNA Databaseby Sharon FernandesTimes of IndiaAugust 2nd, 2015India's Human DNA Profiling Bill 2015 proposes to set up a national DNA database of criminals that will include rapists, murderers and kidnappers.
Drifting Away from Informed Consent in the Era of Personalized Medicineby Erik ParensThe Hastings Center ReportJuly 23rd, 2015In our excitement about the technological capacity to gather genomic data at an ever-lower cost, we are drifting away from what has long been a basic ethical commitment.
Your 23andMe DNA Can Be Used In Racist, Discriminatory Waysby Stephanie M. LeeBuzzFeedJuly 22nd, 2015A programmer came up with an app that can block users from websites based on information drawn from their DNA about "sex, ancestry, disease susceptibility, and arbitrary characteristics."
US Tailored-Medicine Project Aims for Ethnic Balanceby Sara ReardonNature NewsJuly 21st, 2015The $215-million Precision Medicine Initiative is having trouble meeting an imminent deadline, in part because its priorities include filling racial and socio-economic gaps left by other long-term studies.
Google is Scouring Ancestry.com to Find Out What's In Your Genesby Caroline ChenBloomberg BusinessweekJuly 21st, 2015Google Inc.’s Calico, which studies aging and related diseases, will delve into the genetic database amassed by Ancestry.com to look for hereditary influences on longevity.
Don't Mistake Genetics for Fateby Andrew Gelman & Kaiser FungThe Daily BeastJuly 11th, 2015It’s easy for the media to get misled on studies that seem to support genetic determinism. The result is that readers are exposed only to the puffery but only rarely to the skepticism.
Misunderstanding the Genome: A (Polite) Rantby Jonathan GitlinArsTechnicaJuly 8th, 2015One misconception: Genetic tests don't always tell you if someone has a disease. They're typically probabilistic — they tell you if you've got a greater chance of a problem than the average person.
Six Months of Progress on the Precision Medicine Initiativeby Brian Deese & Stephanie DevaneyOffice of Science and Technology PolicyJuly 8th, 2015The Obama Administration has released draft guiding principles to protect privacy and build public trust as the Precision Medicine Initiative develops.
Genome Researchers Raise Alarm Over Big Databy Erika Check HaydenNature NewsJuly 7th, 2015Storing and processing genome data will exceed the computing challenges of running YouTube and Twitter, biologists warn.
Should Babies Have Their Genomes Sequenced?by Anna NowogrodzkiMIT Technology ReviewJuly 2nd, 2015The BabySeq project in Boston has begun collecting data to quantify the risks and benefits of DNA sequencing at birth.
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