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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.

New Psychiatric DNA Testing Is Unproven Groundby Susan Donaldson JamesNBC NewsOctober 4th, 2015Using genetic testing to determine the best course of psychiatric medications is an unproven proposition that may pose risks to patients' health.
Who has your DNA—or wants itby Jocelyn KaiserScienceSeptember 25th, 2015More and more groups are amassing computer server–busting amounts of human DNA. Science's informal survey found at least 17 biobanks that hold—or plan to hold—genomic data on 75,000 or more people.
Can 23andMe have it all?by Kelly ServickScienceSeptember 25th, 2015Amid 30 recent deals with biotech and pharma companies, 23andMe hired Genentech retiree Richard Scheller who plans to hire 25 scientists in the next year to begin drug development based off the direct-to-consumer genomic database.
Can knowing you and your family may get Alzheimer’s ever be positive?by Giulia RhodesThe GuardianSeptember 21st, 2015In the vast majority of cases, the cause of Alzheimer’s remains unclear, a complex interplay of environmental and genetic factors not yet fully understood.
Blueprint in hand, NIH embarks on study of a million peopleby Jocelyn KaiserScience InsiderSeptember 17th, 2015As the Precision Medicine Initiative million-person study moves forward, an NIH committee is urging the recruitment of any willing volunteers.
Why you shouldn’t know too much about your own genesby Carolyn JohnsonWashington PostSeptember 11th, 2015The poster child for the uncertainty underlying direct-to-consumer DNA testing is a gene called MTHFR. In almost no cases does testing for it have any medical utility.
Genetic testing firms in China happy to sell your DNA secretsby Staff ReporterWant China TimesSeptember 10th, 2015As 23andMe strikes a slew of pharma and biotech deals, it's an open secret that sequencing companies can't make money on tests, but rely on the value of big bio data to drug developers.
"Moonshot Medicine": Putative Precision vs. Messy Genomesby Gina Maranto, Biopolitical Times guest contributorSeptember 9th, 2015The promise is "personalized" genetic treatment plans; the reality is that most health disparities are environmental.
Biotech Imagination: Whose Future is this?by Jessica CussinsSeptember 8th, 2015A feature in PLOS Biology highlights insider predictions about the next ten years in genetics and genomics with unanimous optimism. But whose future is this?
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, 2015British Columbia is grappling with regulatory and accreditation issues for a company planning to launch the first direct-to-consumer DNA testing service based in the province.
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, 2015A legal researcher discusses a modified draft bill that continues to raise several critical concerns relating to privacy, and ethical uses of DNA samples and the proposed 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.
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