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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.



Poking Holes in Genetic Privacyby Gina KolataThe New York TimesJune 16th, 2013For years now, a steady stream of research has eroded scientists’ faith that DNA can be held anonymously.
After Patent Ruling, Availability of Gene Tests Could Broadenby Andrew PollackThe New York TimesJune 13th, 2013Almost immediately after the Supreme Court ruled that human genes could not be patented, several laboratories announced they, too, would begin offering genetic testing for breast cancer risk.
Reactions to the Supreme Court Ruling Against Myriadby Pete ShanksBiopolitical TimesJune 13th, 2013The unanimous Supreme Court decision that human genes may not be patented was greeted with enthusiasm by the large coalition of plaintiffs and supporters, while the losers tried to put a brave face on it.
Supreme Court Strikes Down Gene Patentsby Pete Shanks and Marcy DarnovskyBiopolitical TimesJune 13th, 2013The Supreme Court's ruling against Myriad Genetics is a triumph for common sense and the common good, and for scientific research and legal fundamentals as well.
Supreme Court Rules Human Genes May Not Be Patentedby Adam LiptakThe New York TimesJune 13th, 2013Isolated human genes may not be patented, the Supreme Court ruled unanimously on Thursday.
Be Prepared for the Big Genome Leakby Steven E. BrennerNatureJune 12th, 2013Concerns are growing about our ability to properly control access to the information held in genetic research databases.
Size Mattersby Abby Lippman, Biopolitical Times guest contributorJune 11th, 2013Even if there really is a way to use telomere length to predict lifespans, this mirror into our inner workings raises troubling questions.
What Happened When I Had My Genome Sequencedby Carole CadwalladrThe Guardian June 8th, 2013"I was sanguine about having my genome sequenced but maybe that's my faulty risk calculation."
What Clinical Geneticists Think About DTC Genetic Testingby Dr Philippa BricePHG FoundationMay 31st, 2013A survey of over 100 European clinical geneticists reveals general opposition to the way in which direct-to-consumer genetic testing is delivered by commercial providers.
Genetic Tests: Who Should Know and Who Should Tell?by Pete ShanksBiopolitical TimesMay 29th, 2013The guidelines about "incidental findings" from genetic tests recently proposed by American College of Medical Genetics and Genomics continue to provoke debate, as does the broad concept of routine whole-genome analysis.
Cancer Inc.by Jessica CussinsBiopolitical TimesMay 28th, 2013Angelina Jolie’s widely discussed op-ed about her preventative double mastectomy glosses over the impact of one company’s patent on the “breast cancer genes” as well as alternative choices that are available to women who have mastectomies.
California Bill Would Prevent Genetic-Testing Firms from Using Surreptitiously Obtained DNAby Jessica ShugartMercury NewsMay 23rd, 2013Under current California law, genetic testing companies can reveal your most intimate biological secrets to anybody, without your knowledge or permission. A new bill may change that.
Angelina Jolie, Breast Cancer, and You: How to Make the Right Decisions for YOUR Healthby Judy NorsigianOur Bodies Our BlogMay 17th, 2013It is now up to women’s health advocates to ensure that media coverage and public debate don't offer false information or false hope.
Gene-Testing Dispute Focuses on How Much a Patient Should Knowby John LauermanBloombergMay 16th, 2013Should patients undergoing broad DNA testing for a specific ailment be told of unexpected findings that signal risk of cancer or other serious diseases, even if they don’t request the information?
Predicting the IQ of Future Peopleby Pete ShanksBiopolitical TimesMay 15th, 2013The resignation of Jason Richwine from the Heritage Foundation raised the profile of racist views about IQ. Expect new publicity soon for genetic claims about intelligence.
Angelina Jolie and the Fate of Breast Cancer Genes[Quotes CGS's Marcy Darnovsky]by Alexandra Le TellierLos Angeles TimesMay 14th, 2013Angelina Jolie described her double mastectomy as a way to gain control over mutations in her "breast cancer genes," but how much control we have over BRCA1 and BRCA2, and human genes in general, is yet to be determined.
EEOC Files and Settles Its First GINA-based Employment Discrimination Lawsuitby Jennifer K. WagnerGenomics Law ReportMay 13th, 2013Although individuals have brought complaints against employers alleging violations, this is the first lawsuit initiated by the EEOC to enforce the Genetic Information Nondiscrimination Act.
Talking Biopolitics is Back!by Jessica CussinsBiopolitical TimesMay 13th, 2013A series of live web-based conversations with cutting-edge thinkers on the social meaning of human biotechnologies will be kicking off next week. RSVP now to join the conversations!
ACMG Issues Clarification Over Incidental Findings Guidanceby Dr Philippa Brice and Dr Ron ZimmernPHG FoundationMay 7th, 2013The American College of Medical Genetics has released a clarification of recent guidance issued on the subject of incidental findings in clinical genomics.
Sixty Years of a DNA World Viewby Sujatha ByravanThe HinduMay 6th, 2013The popular notion of the double helix being the main and the only player in cellular and genetic information is quite flawed.
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