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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.



Gene Mapping May Not Be for Everyoneby Karen WeintraubUSA TodayAugust 22nd, 2016George Church wants everyone to have their full genome sequenced, but many say we don't know enough about genetics to justify it.
These New Stem Cell Treatments Are Expensive — and Unprovenby Michael HiltzikLos Angeles TimesAugust 19th, 2016"Stem cells have become a medical buzzword," Paul Knoepfler notes. "I see a lot of businesses using direct marketing to patients to take advantage of that."
ExAC Project Pins Down Rare Gene VariantsNature EditorialAugust 17th, 2016A new study found only 9 of 192 variants were actually linked to pathogenic disease despite ongoing use in diagnosis and treatment.
In the Fight for Our Genes, Could We Lose What Makes Us Human?by Ziyaad BhoratopenDemocracyAugust 17th, 2016The rapid commercialization of genetics threatens human dignity as our biology is exposed to society's political economy.
CRISPR patent fight: The legal bills are soaringby Sharon BegleySTATAugust 16th, 2016Editas has already spent $10.9M in 2016, but many in the CRISPR field wonder privately why Broad and UC Berkeley have not reached a settlement.
Illumina Would Like You to Sequence More DNA, Pleaseby Sarah ZhangWIREDAugust 15th, 2016The leader of the DNA sequencing market has a start-up accelerator program to find new applications for its technology.
Athletes are keeping their distance from a genetic test for concussion risksby Rebecca RobbinsSTATAugust 15th, 2016Sports competitors, insurers, and researchers are cautious about the privacy and geneticization issues behind testing for "athletic" genes.
Ethical questions raised in search for Sardinian centenarians' secretsby Stephanie KirchgaessnerThe GuardianAugust 12th, 2016Samples from residents of Sardinia’s "Blue Zone," who are famed for longevity, have been sold to a for-profit British research firm.
Scientists break 13-year silence to insist 'three-parent baby' technique is safeby Ian JohnstonThe IndependentAugust 11th, 2016The researchers conclude the technique "can produce a viable pregnancy." But the pregnancy they established resulted in miscarriage.
Diversity, disability and eugenics: An interview with Rob Sparrowby Xavier SymonsBioEdgeAugust 11th, 2016Philosophers and the medical profession have been way too swift to make judgments about other people’s quality of life. We're not as far from the bad old eugenics as many think.
The Human Genome Is Having Its Facebook Momentby Whet MoserChicago MagazineAugust 9th, 2016In less than a decade, as many people could have their genomes sequenced as use the social networking site (~1.7 billion monthly users).
Mind your genes! The dark legacy of eugenics lives onby Natasha MillerABC [Australia]August 8th, 2016The misguided science of behavioral genetics and the social engineering potential of CRISPR show we have much to remember about the history of eugenics.
Do Olympians Have Better Genes Than You And Me?by Christina FarrFast CompanyAugust 6th, 2016Genetic tests aimed at discerning the genetic basis for athletic ability could be used coercively, and are undermined by important environmental factors.
Silicon Valley was going to disrupt capitalism. Now it’s just enhancing itby Evgeny MorozovThe GuardianAugust 6th, 2016Tech giants thought they would beat old businesses but the guardians of old capitalism are using data troves to become more, not less, resilient.
The surprisingly small benefit of some very (expensive) Big Ideasby Joe GibesBioethics @ TIUAugust 5th, 2016A new article in JAMA looks at the unfulfilled hype that has become entrenched the fields of stem cells, genetics, and electronic health records.
Questions about Deaths in Cancer Trials using Gene-Altered Cellsby Katherine DrabiakBiopolitical Times guest contributorAugust 5th, 2016Excitement about immunotherapy and gene therapy approaches to cancer has eclipsed ethical questions about seven recent deaths in clinical trials.
Why gene-therapy drugs are so expensiveby N.L.The EconomistAugust 3rd, 2016British pharmaceutical company GSK announced it will charge US$665,000 for a gene therapy for ADA-SCID (aka "bubble boy disease").
The Case Against Public Investment in Reproductive Genetic Modificationby Jessica Cussins, Biopolitical Times guest contributorAugust 3rd, 2016Philosopher Tina Rulli argues that three-person IVF germline modification is not a “life-saving” medical therapy.
23andMe data points to genes affecting depression riskby Malcolm RitterAssociated PressAugust 1st, 2016But hundreds of genes may be at play, and environmental risk factors likely overwhelm genetics.
How Your Health Data Lead A Not-So-Secret Life Onlineby Angus ChenNPRJuly 30th, 2016The vast majority of mobile health apps on the marketplace aren't covered by the federal law protecting health data, HIPAA.
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