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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 ďancestry tests.Ē

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.



Drifting Away from Informed Consent in the Era of Personalized Medicineby Erik ParensThe Hastings Center ReportJuly 23rd, 2015In our excitement about the technological capacity to gather genomic data at an ever-lower cost, we are drifting away from what has long been a basic ethical commitment.
Your 23andMe DNA Can Be Used In Racist, Discriminatory Waysby Stephanie M. LeeBuzzFeedJuly 22nd, 2015A programmer came up with an app that can block users from websites based on information drawn from their DNA about "sex, ancestry, disease susceptibility, and arbitrary characteristics."
US Tailored-Medicine Project Aims for Ethnic Balanceby Sara ReardonNature NewsJuly 21st, 2015The $215-million Precision Medicine Initiative is having trouble meeting an imminent deadline, in part because its priorities include filling racial and socio-economic gaps left by other long-term studies.
Google is Scouring Ancestry.com to Find Out What's In Your Genesby Caroline ChenBloomberg BusinessweekJuly 21st, 2015Google Inc.ís Calico, which studies aging and related diseases, will delve into the genetic database amassed by Ancestry.com to look for hereditary influences on longevity.
Don't Mistake Genetics for Fateby Andrew Gelman & Kaiser FungThe Daily BeastJuly 11th, 2015Itís easy for the media to get misled on studies that seem to support genetic determinism. The result is that readers are exposed only to the puffery but only rarely to the skepticism.
Misunderstanding the Genome: A (Polite) Rantby Jonathan GitlinArsTechnicaJuly 8th, 2015One misconception: Genetic tests don't always tell you if someone has a disease. They're typically probabilistic ó they tell you if you've got a greater chance of a problem than the average person.
Six Months of Progress on the Precision Medicine Initiativeby Brian Deese & Stephanie DevaneyOffice of Science and Technology PolicyJuly 8th, 2015The Obama Administration has released draft guiding principles to protect privacy and build public trust as the Precision Medicine Initiative develops.
Genome Researchers Raise Alarm Over Big Databy Erika Check HaydenNature NewsJuly 7th, 2015Storing and processing genome data will exceed the computing challenges of running YouTube and Twitter, biologists warn.
Should Babies Have Their Genomes Sequenced?by Anna NowogrodzkiMIT Technology ReviewJuly 2nd, 2015The BabySeq project in Boston has begun collecting data to quantify the risks and benefits of DNA sequencing at birth.
Why the 'Devious Defecator' Case is a Landmark for US Genetic-Privacy Lawby Natasha GilbertNature NewsJune 25th, 2015A jury awarded $2.25 million to employees whose privacy was violated when their employer conducted genetic testing to determine fault in a job-site incident.
Can DNA Testing be Trusted? The Shockingly Imprecise Science of a Proven Courtroom Toolby Katie WorthFusionJune 24th, 2015Much DNA analysis involves interpretation. With interpretation comes subjectivity, and with subjectivity can come error.
Crime-Scene DNA Errors Spark Complex Legal Questionsby Megan CassidyThe Arizona RepublicJune 22nd, 2015Prosecutors and bureau officials say the mistakes will have a minimal effect on criminal cases, but the real impact of the revelations in courtrooms across the country remains to be seen.
6 Realities of Genomic Researchby Dan KoboldtMass GenomicsJune 19th, 2015Iím as excited about this as anyone (with the possible exception of Illumina). Even so, we should keep in mind that not everything is unicorns and rainbows when it comes to genomic research.
Ancient American Genome Rekindles Legal Rowby Ewen CallawayNature NewsJune 18th, 2015The finding seems likely to rekindle a legal dispute between Native American tribes and the researchers who want to keep studying the 8,500-year-old skeleton.
Down Syndrome Screening isnít About Public Health. Itís About Eliminating a Group of People.by Renate LindemanWashington PostJune 16th, 2015Testing should be used to enhance health and human well-being instead of discriminating against people based on their genetic predisposition.
Taking Control of Our Genetic Information: Could it Go Too Far?by Karthika MuthukumaraswamyThe Huffington PostJune 16th, 2015Up until recently, those in the technology industry and those conducting genomic research would have been considered strange bedfellows. But big data - more specifically, big genomic data - is bringing the two groups together.
Prenatal DNA Test Patent Invalid, U.S. Appeals Court Saysby Andrew ChungReutersJune 12th, 2015The appeals court said the DNA's presence in the blood fell under the U.S. Supreme Court's rule against patenting natural phenomena.
Mosaic Mutations May Not Be Rareby Anna AzvolinskyThe ScientistJune 8th, 2015Somatic mosaicism may be responsible for a larger proportion of genomic variability within humans than previously thought.
Radio Review: The Business of Genetic Ancestryby Matthew ThomasBioNewsJune 8th, 2015The science is, as tends to happen, rather more nuanced than stories of descent from famous dead people.
Genetics in Medicine ó Progress and Pitfallsby EditorialThe LancetJune 6th, 2015According to a White House statement, the "administration believes that altering the human germline for clinical purposes is a line that should not be crossed at this time."
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