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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.



Why we need a law to prevent genetic discriminationby Yvonne Bombard, Ronald Cohn & Stephen SchererThe Globe and Mail [Canada]September 19th, 2016After unanimous passage through Canada's Senate, Bill S-201 on genetic data is now presented before the House of Commons.
DNA Dragnet: In Some Cities, Police Go From Stop-and-Frisk to Stop-and-Spitby Lauren KirchnerProPublicaSeptember 12th, 2016Private police databases expanding with DNA “voluntarily” collected from minors, without oversight or right to challenge.
5 Reasons Why We Need People with Disabilities in the CRISPR Debatesby Emily Beitiks, Biopolitical Times guest contributorSeptember 8th, 2016“Why do I have to keep justifying my existence?” How gene editing policy discussions reproduce ableist assumptions and generate advocacy fatigue.
Passing My Disability On to My Childrenby Sheila BlackNew York TimesSeptember 7th, 2016Drawing on personal experience, Sheila Black challenges the logic of creating "designer babies" with screening or modifying technologies.
Two Women Pregnant after Having Ovarian Mitochondria Injected into EggsThe Japan TimesAugust 30th, 2016Some experts are calling for a careful response to the new procedure, as its safety and effects have not yet been scientifically verified.
Why Gene Tests for Cancer Don't Offer More Answersby Jessica WapnerScientific AmericanAugust 29th, 2016Genetic profiling of tumors has a long way to go. Many patients learn that their cancers have mutations for which no drug exists
Adopted Koreans, Stymied in Search of Birth Parents, Find Hope in a Cotton Swabby Marie Tae McDermottNew York TimesAugust 27th, 2016In search for birth family connections, South Korean adoptees turn to the personal genomics industry for answers.
FBI’s New DNA Process Produces More Matches in Suspect Databaseby Devlin BarrettWall Street JournalAugust 25th, 2016In May, the Bureau reduced the number of genetic locations required for a potential match (from 10-13 to 8-9 loci), resulting in thousands of new "hits."
Kuwait’s new DNA collection law is scarier than we ever imaginedby Daniel RiveroFusionAugust 24th, 2016National security policies require residents, citizens, and visitors to submit DNA samples, shaping new definitions of the country's citizenship.
Accessible Synthetic Biology Raises New Concerns for DIY Biological Warfareby Joseph NeighborVICE MotherboardAugust 23rd, 2016The monopoly on biology once held by governments and universities has been broken, posing significant challenges for the international community.
Experimental Cancer Therapy Holds Great Promise — But at Great Costby Meghana KeshavanSTATAugust 23rd, 2016Patients undergoing immunotherapy clinical trials with CAR-T cells are at risk for deadly cytokine release syndrome, but pharmaceutical companies are racing to get FDA approval.
Humans of the Future Could Be Much Faster Than Usain Bolt or Michael PhelpsSouth China Morning PostAugust 23rd, 2016We could be getting closer to the post-human era, where we modify our own genetics to the point that we're less recognisably "human" than ever before.
Gene Mapping May Not Be for Everyoneby Karen WeintraubUSA TodayAugust 22nd, 2016Genetic tests reveal variations in the genome that might not cause problems but could lead to unnecessary medical tests, anxiety and treatments.
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, 2016When genetics become the next currency for corporations and governments we risk the commercialization and politicization of who we are on a level far deeper than our skin.
CRISPR patent fight: The legal bills are soaringby Sharon BegleySTATAugust 16th, 2016Editas has already spent $10.9 million in 2016. Many in the CRISPR field wonder privately why the Broad Institute 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.
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