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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.



Google Wants to Create a Map of What a Healthy Human Body Looks Likeby George Dvorskyio9July 25th, 2014Called the Baseline Project, it's different from other mass medical and genomic projects in that it's seeking to collect much larger and broader sets of new data.
The Government Owns Your DNA. What Are They Doing with it?by Susan ScuttiNewsweekJuly 24th, 2014We may not be aware that many states have created biobanks funded by genetic material left over from our screening tests and our specimens may be used for purposes we do not fully understand.
Sequenced in the U.S.A.: A Desperate Town Hands Over Its DNAby Amanda WilsonPacific StandardJuly 21st, 2014The new American economy in three tablespoons of blood, a Walmart gift card, and a former mill town’s DNA.
Thousands of Scots Children Have Their DNA Stored on Police DatabaseSTVJuly 15th, 2014More than 35,000 DNA profiles of under-18s are stored on police computers. 251 of them from youngsters 13 and under, including two ten-year-olds.
Vermont High Court Decides Against State DNA Lawby Beth GarbitelliPortland Press HeraldJuly 12th, 2014Collection at arraignment violates a defendant’s right to privacy. “Your entire genome doesn’t become the property of the state merely because you’ve been charged with a crime,” a defense attorney said.
New Challenges of Next-Gen Sequencingby Dan KoboldtMassGenomicsJuly 10th, 2014New bioinformatics victories were short-lived, as sequencing finds itself facing new challenges. Harder challenges. Here are a few of them.
Insurance Companies Shouldn’t Seek Genetic Test Results, Says Privacy Watchdogby Steve RennieThe Canadian PressJuly 10th, 2014Canada’s privacy watchdog is urging insurance companies and others to stop asking applicants for access to the results of genetic tests.
The Perfect 46: A “Science Factual” Film about our Near Futureby Jessica CussinsBiopolitical TimesJuly 10th, 2014A new science fiction film called “a sort of prequel to Gattaca” highlights the rise and fall of a genetic startup that analyzes people’s genomes to assess their ability to produce disease-free children.
China Approves DNA-Sequencing Devices to Detect Genetic Defects in Unborn Babiesby Angela MengSouth China Morning PostJuly 3rd, 2014Controversial testing products for prenatal detection of birth defects get the green light.
Protecting Genetic Data - A Primer for Employersby Jeremy GruberCouncil for Responsible Genetics BlogJuly 2nd, 2014It is critical that employers have a full understanding of current genetic privacy and nondiscrimination protections, to ensure their workplaces are in full compliance with federal and state laws.
Predicting Alzheimer’s Disease: Potential Ethical, Legal, and Social Consequencesby Hank GreelyLaw and Biosciences BlogJune 27th, 2014Several different techniques are providing information about an individual’s risk of being diagnosed with AD, including genetics, biomarkers, and neuroimaging.
Empowering Consumers through Accurate Genomic Testsby Jeffrey ShurenFDA VoiceJune 26th, 2014FDA reviews genetic tests for medical conditions, whether they are intended to be ordered by a healthcare practitioner or directly by the consumer, to assure that consumers receive accurate test results.
About That Creepy Biometric Database, FBI, We'd Like to Know a Bit Moreby J.D. TuccilleReasonJune 26th, 2014The FBI's facial recognition database, into which it wants to put 52 million of our mugs by the end of 2015, is only part of its larger Next Generation Identification program.
Quantified and Analyzed, Before the First Breathby Jessica CussinsBiopolitical TimesJune 26th, 2014Could whole genome sequencing in utero ever become the norm? Should it?
On the Perils of Genetic Testingby Mona GableHuffington PostJune 21st, 2014My siblings and I were emailing each other, sharing information, trying to decide whether to get tested. Did I want to know I was going to die a slow horrible death?
Who Owns Your Tissue? You’d be Surprisedby Timothy CaulfieldToronto Globe and MailJune 20th, 2014Human tissue is a form of personal property. Not only that, once it is removed from a patient, it is owned by the hospital.
For One Baby, Life Begins with Genome Revealedby Antonio RegaladoMIT Technology ReviewJune 13th, 2014A professional blogger says sequencing his son in utero “was more cool than practical.” He did it to show where technology is headed and because he likes “pushing the envelope.”
Community Concerns Regarding the Google-Autism Speaks Ten Thousand Genomes Program (AUT10K)ASANJune 12th, 2014In response to the recent announcement of the new Google-Autism Speaks collaboration to produce, expand and analyze the world’s largest private collection of DNA samples of autistic children and adults.
Who Owns Your Genetic Data? Hint: It's Probably Not Youby Meredith SalisburyThe Huffington PostJune 12th, 2014It seems intuitive to many of us that each person owns his or her genetic data and therefore should control access. But the reality is more complex.
Sweeping Diversity Seen in Mexican Genomesby Erika Check HaydenNatureJune 12th, 2014In some cases, the Mexicans studied are as genetically distinct from each other as are people from different continents.
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