company:23andme

More than 26 million people have taken an at-home ancestry test
▻https://www.technologyreview.com/s/612880/more-than-26-million-people-have-taken-an-at-home-ancestry-test

As many people purchased consumer DNA tests in 2018 as in all previous years combined, MIT Technology Review has found. By the start of 2019, more than 26 million consumers had added their DNA to four leading commercial ancestry and health databases, according to our estimates. If the pace continues, the gene troves could hold data on the genetic makeup of more than 100 million people within 24 (...)

#23andMe #AncestryDNA #MyHeritage #FBI #biométrie #génétique #surveillance #GEDmatch

https://cdn.technologyreview.com/i/images/cheekswab.jpg

Most White Americans’ DNA Can Be Identified Through Genealogy Databases - The New York Times
▻https://www.nytimes.com/2018/10/11/science/science-genetic-genealogy-study.html

https://static01.nyt.com/images/2018/10/12/science/12DNA-print/13DNA-facebookJumbo.jpg

The genetic genealogy industry is booming. In recent years, more than 15 million people have offered up their DNA — a cheek swab, some saliva in a test-tube — to services such as 23andMe and Ancestry.com in pursuit of answers about their heritage. In exchange for a genetic fingerprint, individuals may find a birth parent, long-lost cousins, perhaps even a link to Oprah or Alexander the Great.

But as these registries of genetic identity grow, it’s becoming harder for individuals to retain any anonymity. Already, 60 percent of Americans of Northern European descent — the primary group using these sites — can be identified through such databases whether or not they’ve joined one themselves, according to a study published today in the journal Science.

Within two or three years, 90 percent of Americans of European descent will be identifiable from their DNA, researchers found. The science-fiction future, in which everyone is known whether or not they want to be, is nigh.

Their results were eye-opening. The team found that a DNA sample from an American of Northern European heritage could be tracked successfully to a third-cousin distance of its owner in 60 percent of cases. A comparable analysis on the MyHeritage site had similar results. (The analysis focused on Americans of North European background because 75 percent of the users on GEDmatch and other genealogy sites belong to that demographic.)

Some experts have raised questions about the study’s methodology. Its sample size was small, and it didn’t factor in that more than one match is often required to identify a suspect.

CeCe Moore, a genetic genealogist with Parabon, a forensic consulting firm, also expressed worry in an email that the Science paper may obscure the difficulty involved in puzzling out someone’s identity; it takes a highly skilled expert to build a family tree from the initial genetic clues.

Still, she said, the takeaway of the study “is not news to us.” In recent months Ms. Moore has been involved in a dozen murder and sexual assault cases that used GEDmatch to identify suspects. Of the 100 crime-scene profiles that her firm had uploaded to GEDmatch by May, half were obviously solvable, she said, and 20 were “promising.”

“I think it’s a strong and convincing paper,” said Graham Coop, a population genetics researcher at the University of California, Davis. In a blog post in May, Dr. Coop calculated just how lucky investigators had been in the Golden State killer case. He reached a statistical conclusion similar to Dr. Erlich’s: society is not far from being able to identify 90 percent of people through the DNA of their cousins in genealogical databases.

“This is this moment of, wow, oh, this opens up a lot of possibilities, some of which are good and some are more questionable,” he said.

In an alarming result, the Science study found that a supposedly “anonymized” genetic profile taken from a medical data set could be uploaded to GEDmatch and positively identified. This shows that an individual’s private health data might not be so private after all.

#Génomique #ADN #Vie_privée

Des tests génétiques dits récréatifs, mais pas inoffensifs
▻https://linc.cnil.fr/fr/des-tests-genetiques-dits-recreatifs-mais-pas-inoffensifs

Des tests génétiques récréatifs – interdits en France - sont proposés depuis une dizaine d’années par des acteurs étasuniens ; des services proposés à coût relativement bas qui sous-tendent des marchés à plusieurs faces parfois sans visibilité pour les utilisateurs. La prise de participation de GlaxoSmithKline dans le capital de la startup pionnière de ce domaine 23andMe vient relancer les questionnements sur ce secteur. Le 25 juillet 2018, l’entreprise 23andMe annonçait l’entrée du laboratoire (...)

#23andMe #Genentech #GlaxoSmithKline #Google #MyHeritage #Pfizer #biométrie #santé #BigData #génétique #[fr]Règlement_Général_sur_la_Protection_des_Données_(RGPD)[en]General_Data_Protection_Regulation_(GDPR)[nl]General_Data_Protection_Regulation_(GDPR) #CNIL #Ancestry.com #FDA (...)

##santé ##[fr]Règlement_Général_sur_la_Protection_des_Données__RGPD_[en]General_Data_Protection_Regulation__GDPR_[nl]General_Data_Protection_Regulation__GDPR_ ##Roche ##G29

https://linc.cnil.fr/sites/default/files/thumbnails/image/dna-project-lumina-walter-waymann-red.jpg

DNA ancestry tests may look cheap. But your data is the price
▻https://www.theguardian.com/commentisfree/2018/aug/10/dna-ancestry-tests-cheap-data-price-companies-23andme

Do customers realise that genetic genealogy companies like 23andMe profit by amassing huge biological datasets ? In 1884, at the International Health Exhibition in South Kensington, four million punters came to view the latest scientific marvels : drainage systems, flushing toilets and electrically illuminated fountains. There, the scientist Francis Galton set up the Anthropometric Laboratory, where common folk would pay 3d (around 80p today) to enter, and anonymously fill out a data card. (...)

#23andMe #algorithme #BigData #génétique #marketing

▻https://i.guim.co.uk/img/media/de5a99eca5bf04f3a9029aac3880a28532198df6/0_0_2347_1408/master/2347.jpg

DNA Testing Might Help Reunite Families Separated by Trump. But It Could Create a Privacy Nightmare.
▻https://theintercept.com/2018/06/27/immigration-families-dna-testing

In the face of the Trump administration’s neglect and indifference toward the reunification of the thousands of immigrant families it has forcibly separated, some lawmakers, activists, and celebrities have called for the use of DNA testing, along with other biometrics, as a means to return some 3,700 children to their parents. So far, at least two direct-to-consumer genealogy companies have heeded those calls. MyHeritage and 23andMe have both offered to donate DNA sampling kits for the (...)

#23andMe #biométrie #génétique #surveillance #migration

https://theintercept.imgix.net/wp-uploads/sites/1/2018/06/dna-pattern-feat-1530048896.jpg

Are Genetic Testing Sites the New Social Networks? - The New York Times
▻https://www.nytimes.com/2018/06/16/style/23-and-me-ancestry-dna.html

https://static01.nyt.com/images/2018/06/07/style/00dna-04/00dna-04-facebookJumbo.jpg

At-home genetic testing services have gained significant traction in the past few years. 23andMe, which costs $99, has over five million customers, according to the company; AncestryDNA (currently $69), over 10 million.

The companies use their large databases to match willing participants with others who share their DNA. In many cases, long-lost relatives are reuniting, becoming best friends, travel partners, genealogical resources or confidantes.

The result is a more layered version of what happened when Facebook first emerged and out-of-touch friends and family members found one another. Children of long-ago casual sperm donors are finding their fathers. Adoptees are bonding to biological family members they’ve been searching for their entire lives.

The Genetic Global Village

Others who have their DNA tested are forming relationships not with specific people, but with their family’s places of origin.

One example is Leah Madison, 32, an education outreach coordinator for the Desert Research Institute in Reno, Nev. She was planning trips to Peru and Korea when she learned a year and a half ago from 23andMe that her family came from Greece, Italy and the Iberian Peninsula.

Over the winter she and her father went to the Iberian Peninsula for two weeks. She felt an ineluctable connection to the people as she ate their bread masterpieces, toured buildings by Antoni Gaudí and danced to flamenco music.

“I had a piece of paper that tells me I’m from Spain,” Ms. Madison said. “But then I went there and I noticed all these people have curly hair, and maybe that is where mine comes from?” Now she feels compelled to visit the other places as well.

Perhaps the most frustrating reality is when users don’t have any known connections at all. This can happen to people in certain ethnic groups, including Latinos and Asians, that thus far have fewer people using the services and a smaller database.

“Diversity in genetic research is a global problem,” said Joanna Mountain, the senior director of Research at 23andMe, adding that the company is offering free testing in some countries to begin to rectify that. “The results for Hispanics and Asians aren’t there yet, but they are coming,” said Jenn Utley, a family historian at Ancestry (the parent company of AncestryDNA). “The database keeps growing.”

#Génomique #Données_personnelles #Familles #23andme

What consumer DNA data can and can’t tell you about disease risk | Science News
▻https://www.sciencenews.org/article/health-dna-genetic-testing-disease

False alarm
A clinical lab checked worrisome results that people received from consumer DNA testing companies. Of the variants flagged as harmful, 40 percent were false positives. All but one of the bad calls were in cancer risk genes: BRCA1, BRCA2, TP53, CHEK2, MLH1 and ATM.

https://www.sciencenews.org/sites/default/files/2018/05/060918_genetics_lara-diamond_inline_pie.png

Risks explained
Customers of 23andMe who want to unlock information on their breast cancer risk must click through several screens of information before learning the result. This screen explains that risk goes beyond the three variants reported.

https://www.sciencenews.org/sites/default/files/2018/05/060918_genetics_lara-diamond_23andme_rev.jpg

The rise and fall and rise again of 23andMe : Nature News & Comment
►http://www.nature.com/news/the-rise-and-fall-and-rise-again-of-23andme-1.22801

http://www.nature.com/polopoly_fs/7.46922.1507718105!/image/Wojcicki.jpg_gen/derivatives/nature_homepage/Wojcicki.jpg

23andme has always been the most visible face of direct-to-consumer genetic testing, and it is more formidable now than ever before. In September, the company announced that it had raised US$250 million: more than the total amount of capital raised by the company since its inception. Investors estimate that it is worth more than $1 billion, making it a ’unicorn’ in Silicon Valley parlance — a rare and valuable thing to behold. But for scientists, 23andme’s real worth is in its data. With more than 2 million customers, the company hosts by far the largest collection of gene-linked health data anywhere. It has racked up 80 publications, signed more than 20 partnerships with pharmaceutical firms and started a therapeutics division of its own.

“They have quietly become the largest genetic study the world has ever known,” says cardiologist Euan Ashley at Stanford University, California.

Scientists, meanwhile, were dubious. Family history was and is still a more powerful indicator than genes are for predicting the risk of most diseases. “The evidence is increasingly strong that the benefits of direct-to-consumer testing for these kinds of indications are somewhere between small and zero,” says Stanford University lawyer and ethicist Hank Greely, a long-time critic of the company.

#Génomique #23andme

The rise and fall and rise again of 23andMe : Nature
►http://www.nature.com/news/the-rise-and-fall-and-rise-again-of-23andme-1.22801

http://www.nature.com/polopoly_fs/7.46922.1507718105!/image/Wojcicki.jpg_gen/derivatives/nature_homepage/Wojcicki.jpg

Most scientists no longer see 23andme as a frivolous undertaking. The ability to recruit two million customers, and potentially many more, has been a huge draw, and researchers are lining up to collaborate with the company.

« Un marché aux données génétiques » qui interroge
▻http://www.lemonde.fr/idees/article/2016/04/27/un-marche-aux-donnees-genetiques-qui-interroge_4909596_3232.html

En janvier 2015, la start-up 23andMe a signé un contrat de 60 millions de dollars (53,1 millions d’euros) avec la société de biotechnologies (« biotech ») Genentech pour le séquençage complet du génome de 3 000 clients atteints de la maladie de Parkinson. Une surprise ? Non, un événement prévisible.

Depuis les années 1990, des « biotechs » américaines investissent à perte dans la collecte d’échantillons et d’informations, pour constituer une biobanque qu’elles valorisent, ensuite, auprès de l’industrie pharmaceutique. Une marchandisation des données génétiques, en somme, dont certains, en France, semblaient découvrir l’existence, en raison de son interdiction sur le sol national.

#economie #génétique #biotech

23andMe m’a découvert le gène de la mucoviscidose et un demi-frère

Depuis octobre 2015, la société 23andMe a de nouveau l’autorisation de commercialiser des tests génétiques à visée médicale, après deux ans de suspension. Rue89 a testé.

▻http://rue89.nouvelobs.com/2016/01/10/23andme-decouvert-gene-mucoviscidose-demi-frere-262706

#génétique #adn

Cops are asking Ancestry.com and 23andMe for their customers’ DNA | Fusion
▻http://fusion.net/story/215204/law-enforcement-agencies-are-asking-ancestry-com-and-23andme-for-their-custo

When companies like Ancestry.com and 23andMe first invited people to send in their DNA for genealogy tracing and medical diagnostic tests, privacy advocates warned about the creation of giant genetic databases that might one day be used against participants by law enforcement. DNA, after all, can be a key to solving crimes. It “has serious information about you and your family,” genetic privacy advocate Jeremy Gruber told me back in 2010 when such services were just getting popular.

Now, five years later, when 23andMe and Ancestry both have over a million customers, those warnings are looking prescient. “Your relative’s DNA could turn you into a suspect,” warns Wired, writing about a case from earlier this year, in which New Orleans filmmaker Michael Usry became a suspect in an unsolved murder case after cops did a familial genetic search using semen collected in 1996. The cops searched an Ancestry.com database and got a familial match to a saliva sample Usry’s father had given years earlier. Usry was ultimately determined to be innocent and the Electronic Frontier Foundation called it a “wild goose chase” that demonstrated “the very real threats to privacy and civil liberties posed by law enforcement access to private genetic databases.”

The FBI maintains a national genetic database with samples from convicts and arrestees, but this was the most public example of cops turning to private genetic databases to find a suspect. But it’s not the only time it’s happened, and it means that people who submitted genetic samples for reasons of health, curiosity, or to advance science could now end up in a genetic line-up of criminal suspects.

Both Ancestry.com and 23andMe stipulate in their privacy policies that they will turn information over to law enforcement if served with a court order. 23andMe says it’s received a couple of requests from both state law enforcement and the FBI, but that it has “successfully resisted them.”

23andMe’s first privacy officer Kate Black, who joined the company in February, says 23andMe plans to launch a transparency report, like those published by Google, Facebook and Twitter, within the next month or so. The report, she says, will reveal how many government requests for information the company has received, and presumably, how many it complies with. (Update: The company released the report a week later.)

“In the event we are required by law to make a disclosure, we will notify the affected customer through the contact information provided to us, unless doing so would violate the law or a court order,” said Black by email.

Ancestry.com would not say specifically how many requests it’s gotten from law enforcement. It wanted to clarify that in the Usry case, the particular database searched was a publicly available one that Ancestry has since taken offline with a message about the site being “used for purposes other than that which it was intended.” Police came to Ancestry.com with a warrant to get the name that matched the DNA.

“On occasion when required by law to do so, and in this instance we were, we have cooperated with law enforcement and the courts to provide only the specific information requested but we don’t comment on the specifics of cases,” said a spokesperson.

As NYU law professor Erin Murphy told the New Orleans Advocate regarding the Usry case, gathering DNA information is “a series of totally reasonable steps by law enforcement.” If you’re a cop trying to solve a crime, and you have DNA at your disposal, you’re going to want to use it to further your investigation. But the fact that your signing up for 23andMe or Ancestry.com means that you and all of your current and future family members could become genetic criminal suspects is not something most users probably have in mind when trying to find out where their ancestors came from.

“It has this really Orwellian state feeling to it,” Murphy said to the Advocate.

If the idea of investigators poking through your DNA freaks you out, both Ancestry.com and 23andMe have options to delete your information with the sites. 23andMe says it will delete information within 30 days upon request.

Genetic mugshot recreates faces from nothing but DNA - New Scientist
▻http://www.newscientist.com/article/mg22129613.600-genetic-mugshot-recreates-faces-from-nothing-but-dna.ht

To get a sense of the method’s current power, New Scientist asked Claes and Shriver to predict the appearance of a young woman based on a scan of her DNA performed by the Californian company 23andMe. You can judge for yourself how closely their prediction resembles

http://www.newscientist.com/data/images/ns/cms/mg22129613.600/mg22129613.600-1_1200.jpg

(un exemple n’est pas une preuve, mais c’est un exemple très impressionnant)

#génétique #visage #biométrie via @erinmaochu

La génomique personnelle dans la tourmente (1/2) : 23andMe contre l’Amérique
▻http://www.internetactu.net/2013/12/10/la-genomique-personnelle-dans-la-tourmente-12-23andme-contre-lamerique

Alors qu’en France les tests génétiques privés sont prohibés depuis longtemps, la Food and Drug Administration (FDA) de nos cousins d’outre-Atlantique veut à son tour les interdire. Le 22 novembre, elle demandait à la société 23andMe de cesser de vendre ses kits de génomique personnelle à 99$. Cinq jours plus tard, le 27, elle déposait une plainte en Californie contre…

#big_data #biotechnologies #corps #quantifiedself

23andMe doit cesser de vendre ses tests d’ADN
▻http://www.gizmodo.fr/2013/11/26/23andme-cesser-vendre-tests-adn.html

Quelque chose ne serait pas tout à fait au point au sein des kits d’analyse d’ADN de 23andMe, et la Food and Drug Administration (FDA) a décidé de fourrer son nez dedans. L’agence a donc ordonné à la firme de cesser de commercialiser ses produits…

23andStupid: Is 23andMe Self-Destructing? - Forbes
▻http://www.forbes.com/sites/matthewherper/2013/11/25/23andstupid-is-23andme-self-destructing

23andMe’s business was never going to be selling genetic test kits at $100 a pop; even if the company reaches its goal of selling 1 million kits cumulatively, that’s only $100 million in revenue, a small sum by the standards of biotech and play money at Google. But what a large enough database of people who were sharing not only genetic information but information about their health and their bodies offered was something greater: a tool that could be used to find new genetic connections, for detecting drug side effects, maybe even for finding new diagnostics or cures. That’s why 23andMe needs to get to 1 million kits sold – to build that database. That promise has brought on other investors, including Facebook billionaire Yuri Milner.

23andMe Is Terrifying, But Not for the Reasons the FDA Thinks: Scientific American
▻http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda

What does 23andMe want to do with all that data? Right now the talk is all about medical research—and, in fact, the company is doing some interesting work. It has been sifting through its genomic database, which is combined with information that volunteers submit about themselves, to find possible genetic links to people’s traits. (The bright-light/sneeze genetic tag is a 23andMe discovery.) More promising are 23andMe’s attempts to recruit people who suffer from certain diseases, such as Parkinson’s and a few types of cancer. Simply through brute-force pattern matching, the company has a chance of finding genetic causes of these ailments, which could lead to a way to combat them. (And perhaps a blockbuster patent or three.)

That’s just the beginning, though. 23andMe reserves the right to use your personal information—including your genome—to inform you about events and to try to sell you products and services. There is a much more lucrative market waiting in the wings, too. One could easily imagine how insurance companies and pharmaceutical firms might be interested in getting their hands on your genetic information, the better to sell you products (or deny them to you). According to 23andMe’s privacy policy, that wouldn’t be an acceptable use of the database. Although 23andMe admits that it will share aggregate information about users genomes to third parties, it adamantly insists that it will not sell your personal genetic information without your explicit consent.

#big_data #génétique

Can Humans Fall in Love with Bots ?
▻http://www.newyorker.com/online/blogs/elements/2013/11/her-film-spike-jonze-can-humans-fall-in-love-with-bots.html

He imagines something like this: your virtual assistant has access to your genetic data, your nutrition, and information about your sleeping patterns—all of which already can be monitored and collected by existing apps or biotech companies like 23andMe. The assistant knows that it’s five o’clock in the afternoon, and that you’ve just walked into a Starbucks. It might say, “Hey, Gary, just a heads-up, you might have trouble sleeping if you have coffee right now.” (...) “The more proactive, the more it knows about you, the more empathetic the interaction will be,” Clayton said. (...) Further into the future, these systems may become ever more (...) individualized to suit your needs—a buddy, a flirtatious librarian, or whatever your heart desires.

–---------

▻http://fr.wikipedia.org/wiki/Her

Dans un futur proche, un homme, dont la vie est régie par les nouvelles technologies et les réseaux sociaux, va tomber amoureux d’un programme informatique.

▻http://www.youtube.com/watch?v=WzV6mXIOVl4

23andMe receives patent to create designer babies, but denies plans to do so | The Verge
▻http://www.theverge.com/2013/10/2/4795586/23andme-designer-baby-patent

http://cdn0.sbnation.com/assets/3327119/screen.png

Thanks to personal genomics companies like #23andMe, it’s becoming quicker and easier for us to find out who we are. But will the same technology one day allow us to decide who our babies will be — before they’re even born? That’s the question raised by a newly issued #patent, which grants 23andMe rights to a system that allows parents to pick and choose their children’s traits prior to undergoing fertility treatment.

#brevet #ADN #eugénisme via @calimaq ; après #copyright_madness #patent_madness

Dans les nouvelles du matin :

Google founder splits with wife… Co-founder Sergey Brin and his wife of six years, 23AndMe co-founder Anne Wojcicki, are living apart following Brin’s alleged involvement with a Google employee. Although the couple’s joint assets and projects are substantial, AllThingsD reports that a prenuptial agreement ensures no impact on Google if the couple divorces.

…as a key executive jumps ship. Top Android executive Carlos Barra is defecting to China’s fast-growing smartphone company Xiaomi. According to AllThingsD, Barra was formerly dating the woman who is now involved with Brin.

#vie_privée #google

Personal genetics company patent raises hackles : Nature
►http://blogs.nature.com/news/2012/05/personal-genetics-company-patent-raises-hackles.html

Avec ses #brevets #génétiques 23andme est-elle en train de trahir ses clients ?

According to a blog by company’s co-founder Anne Wojcicki, the #patent “relates to our discovery of a variant in the SGK1 gene that may be protective against #Parkinson’s disease in individuals who carry the rare risk-associated LRRK2 G2019S mutation.”
(...) “I had assumed that 23andMe was against patenting genes and felt in total cahoots all along with you guys. If I’d known you might go that route with my data, I’m not sure I would have answered any surveys.”