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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.

F.D.A. Targets Inaccurate Medical Tests, Citing Dangers and Costsby Robert PearThe New York TimesNovember 23rd, 2015Inaccurate, unreliable medical tests are prompting abortions, unnecessary surgeries, putting tens of thousands of people on unneeded drugs and raising medical costs.
Gene Therapy: Comeback? Cost-Prohibitive?by Elliot Hosman, Biopolitical TimesNovember 19th, 2015Recent CRISPR news sometimes confuses germline modification - which should be put off limits - and gene therapy, which presents its own set of social and ethical risks to resolve before rushing to market.
New Rules Proposed to Address Privacy and Trust in the Precision Medicine Initiativeby Katayoun Chamany, Biopolitical Times guest contributorNovember 19th, 2015The US Precision Medicine Initiative's goal of a million sequenced genomes is helping to propel a revision to the Common Rule governing human subject research.
Genetic tests for sports performance 'virtually meaningless,' experts sayCBC News [Canada]November 16th, 2015Direct-to-consumer genetic tests for athletic ability can be aimed at coaches, parents, and sports teams, but the information they provide is highly misleading.
Theranos isn’t the only diagnostics company exploiting regulatory loopholesby Arielle Duhaime-RossThe VergeNovember 11th, 2015Startups are taking advantage of an FDA exception to offer diagnostic health tests to consumers without peer review or verification of health claims.
Gene therapies offer dramatic promise but shocking costsby Carolyn Y. Johnson & Brady DennisThe Washington PostNovember 11th, 2015Researchers have partially restored a patient's vision by targeting a gene associated with Leber's congenital amaurosis, but the treatment could cost $500,000 per eye.
US FDA sends letter to DNA4Life over consumer gene testsby Julie SteenhuysenReutersNovember 9th, 2015Direct-to-consumer tests to predict drug response could be risky if consumers use them to make decisions about the drugs or dosages they are taking.
As Companies Collect More Health Data, Cops Will Ask To See It[cites CGS's Elliot Hosman]by Stephanie M. LeeBuzzfeedNovember 5th, 2015Law enforcement will request what users share with health technology companies, from DNA to step counts. The nature and number of those requests are largely unknown.
Genetic testing evolves, along with health and ethics debatesby Michael HiltzikLos Angeles TimesOctober 30th, 2015The FDA approved 23andMe to provide carrier tests, turning the personal genomics service into a direct-to-consumer family-planning tool, but without the genetic counselor to explain carrier status risks.
Would you take a genetic test that could lay bare your destiny?by Rowan HooperNew ScientistOctober 29th, 2015Plaques and Tangles, a play now at the Royal Court in London, takes on issues of personal genomics, carrier status testing, and Alzheimer's, asking: "Are we architects of our own destiny or prisoners of our genes?"
Genetic Surveillance: Consumer Genomics and DNA Forensicsby Elliot Hosman, Biopolitical TimesOctober 29th, 2015As more biotech companies move to “cash in on the genome,” we need to connect the conversations on personal genomics, DNA forensics, immigration, and biological discrimination.
Fresh Territory for Bioethics: Silicon Valleyby Susan GilbertBioethics Forum The Hastings Center October 28th, 2015Biomedical researchers and Silicon Valley are increasingly looking to each other for access to human subjects and new ventures, raising questions about informed consent and the security of private genetic data.
Making Indigenous Peoples Equal Partners in Gene Researchby Ed YongThe AtlanticOctober 23rd, 2015After leaving a partnership with NIH in 2003, the Akimel O’odham (Pima) tribe is retaining control of their bio samples and shaping the goals of a diabetes project with genomic researchers.
Cops Want To Look At 23andMe Customers’ DNAby Stephanie M. LeeBuzzFeedOctober 21st, 2015The FBI and other agencies have asked for — and been denied — five users’ data, according to a new transparency report on the company's website, and chain of custody could be a legal obstacle for future requests.
23andMe Will Resume Giving Users Health Databy Andrew PollackThe New York TimesOctober 21st, 2015Two years after a forced hiatus from providing consumers with genetic health probabilities, the FDA has cleared 23andMe to provide carrier status and lactose intolerance tests.
What's Your DNA Worth? The Scramble to Cash In On The Genome[cites CGS's Marcy Darnovsky]by Alex LashXconomyOctober 20th, 2015Vast pools of genomic data may unlock health secrets, but what is the risk of "sharing" our data for biotech corporate profits, and is it greater than the nebulous future rewards?
Could Having Your DNA Tested Land You in Court?by Claire MaldarelliPopular ScienceOctober 16th, 2015Police in Idaho accused a man of an unsolved murder via partial DNA matching based on DNA records obtained from Ancestry.com.
Handheld DNA reader revolutionary and democratising, say scientistsby Ian SampleThe GuardianOctober 15th, 2015The $1,000 device is not designed to read human genomes, but it can quickly identify bacteria and viruses, and spot different gene variants in sections of human genetic code.
Big Money Heading for Consumer Genomicsby Pete ShanksBiopolitical TimesOctober 15th, 2015Investors are now betting hundreds of millions of dollars that the direct-to-consumer testing business will become profitable.
A Tale of Do-It-Yourself Gene Therapyby Antonio RegaladoMIT Technology ReviewOctober 14th, 2015An American biotech CEO of BioViva claims she is the first to undergo gene therapy to reverse aging, participating in an experiment that intentionally avoided approval processes.
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