How Apple, Google, and Microsoft are trying to get inside your genes

re-posted from the Council for Responsible Genetics, and fusion

by Daniela Hernandez 

Not satisfied by having our emails, chats, status updates, search histories, clicking behaviors, and shopping preferences, some of Silicon Valley’s most powerful tech titans are in an arms race to get access to your most personal information:
your DNA.

Last week, for instance, the MIT Technology Review reported that Apple was looking to integrate genetic data into studies that run atop its new open-source research platform, ResearchKit. That should come as no surprise. There’s a national focus on personalized medicine, and since DNA information is becoming cheaper to get and store, the healthcare industry is hoping that personalized medicine will be part of the solution to rising costs.

Here’s a look at how three tech companies are preparing to dominate your DNA:

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Interview on BEL-AIR radio about the future of genetic privacy

hype

Listen to the interview here

On April 6th, Heather chatted with Biononymous contributor Fei Liu (DJ TRYTOBEGOOD) and her co-hosts HYPEROPIA 20/30 on Brooklyn-based radio collective, BEL-AIR radio. We covered topics from Heather’s motivations for creating pieces like Stranger Visions, to the cultural authority we grant to DNA and the ethical issues behind race and genetics.

It’s not that we should be fearful of this stuff, we should resist it. I’m never a fan of fear but I am a big fan of trying to take things into our own hands and enable resistance wherever possible.

Listen to the interview here

After Genetic Privacy: an Interview with Yaniv Erlich

In 2013, Yaniv Erlich’s genetics lab at MIT (now at Columbia) called the entire possibility of genetic anonymity into question when they discovered the identities of DNA donors by cross-referencing their genetic data with publicly available information from genealogy databases. Their article “Identifying Personal Genomes by Surname Inference”(1) published in Science created a stir across privacy and medical research communities.

Heather Dewey-Hagborg: In your own words, can you give us a brief explanation of the study? What did you do and what did it mean to you?

Yaniv Erlich: We showed that it is possible in some cases to infer the surnames of males from their allegedly de-identified DNA samples. In most societies, a male receives his surname from his father, who received his surname from his own father and so own. Now, since males receive their Y chromosome from their father and the father of their father, this process creates a correlation between surnames and y chromosomes.

Our technique exploits this correlation to identify the surname of individuals and uses open genetic genealogy databases to infer the right surname. Surnames are strong identifiers. Correctly inferring them dramatically narrows the search space. We specifically showed that if the age and state of the targeted individual are known (HIPAA does not protect these two identifiers), then a surname inference can virtually resolve the identity of the person.

To show that this technique works, we were able to identify with extremely high probabilities close to 50 people that were part of a large scale study, called the 1000 Genomes.

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Forensic DNA Phenotyping in the news

From NYTimes. Original caption read: The police in Columbia, S.C.,  released this sketch of a possible suspect based on DNA left at the crime scene. Parabon NanoLabs, which made the image, has begun offering DNA phenotyping services to law enforcement agencies.

From NYTimes. Original caption read: The police in Columbia, S.C., released this sketch of a possible suspect based on DNA left at the crime scene. Parabon NanoLabs, which made the image, has begun offering DNA phenotyping services to law enforcement agencies.

Lots of media attention recently to a new company Parabon NanoLabs who is offering a forensic DNA phenotyping service (creating 3d virtual portraits from DNA) apparently to police nationwide. Popular Science broke the story as far as I can tell and I received a lot of email this week when the New York Times put their own story about the service on their homepage Monday. There are so many issues that went unaddressed in these articles which focus primarily on discussing this as a *technology*. I wrote a letter to the editor of the New York Times addressing one aspect of this I felt went far under-discussed: the way in which it forms a supposedly scientific basis for a new form of racial profiling. Here is the letter I wrote, we’ll see if they respond or publish it.

Update 3/5/15 – The New York Times did not publish or respond to my letter.

TO THE EDITOR:

In “Building a Face, and a Case, on DNA” (NYT, Feb. 23, 2015) Andrew Pollack describes how police departments are mining DNA evidence to create police sketches. Since 2012 I have been creating life size full color 3D portraits from DNA in chewing gum, cigarettes and hair I found on New York’s streets for an art series called Stranger Visions that has shown in locally and internationally from the New York Public Library, to the Science Gallery in Dublin and Ars Electronica, Linz.

Through my own work in the molecular biology lab, I discovered that this science is still in its infancy. As noted in your article, there are few facial characteristics that can be known for certain, lending the practice a speculative nature. While eye and hair color can be guessed with a strong probability, skin color and race, hidden behind the term “ancestry,” are much more problematic.

Rather than producing a useable sketch, the technology allows police departments to hide the practice of racial profiling beneath a veneer of “legitimate” science. After years of controversy, racial profiling has been widely controversial and rejected by the public. But if you glance at the profile that is actually generated by Identitas and Parabon, you see a composite model based on very few genetic variables that relate to facial features. It’s a portrait of a generic African American male—a visualization of a stereotype.

The real question here is whether scientists and society in general is willing to accept a new form of racial profiling that masquerades as science?

Sincerely,
Heather Dewey-Hagborg
Assistant Professor of Art and Technology Studies, School of the Art Institute of Chicago

Newborn DNA Storage Raises Serious Privacy Concerns

Before they are even a week old, ninety-eight percent of the 4.3 million babies born annually in the United States have a small sample of blood taken from their heels. These newborn bloodspots (NBS) are then screened for a variety of inherited conditions and are often later stored in state-operated databases. Newborn screening itself is an important public health program and some have described these residual sample “biobanks” in equally positive terms. Although there are concrete benefits of newborn testing, there are also troubling consent and privacy issues raised by the screening, storage and use of the samples.

 

Newborn screening began in the United States as a series of state level pilot programs in the 1960s to test for PKU, a rare genetic condition that is easily treatable if caught early. The success of these early programs led to rapid adoption of newborn screening among all states in the US and the number of conditions screened for has grown progressively since with additional funding at the Federal level. Because of the singular history of newborn screening, it remains the only widespread health testing in the US conducted not by an individual’s doctor, hospital, or health care provider but by individual state departments of public health. This singular history can also account for a wide disparity in state law and policy with regards to parental consent, sample storage and use.

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Biopolitics – An interview with Timothy Campbell

Biopolitics: A Reader Edited by Timothy Campbell and Adam Sitze

Timothy Campbell is a Professor of Italian in the Department of Romance Studies at Cornell University and together with Adam Sitze, a professor of Law, Jurisprudence and Social thought at the Amherst College he recently edited a new collection of essays on the topic of biopolitics. Campbell translated Roberto Esposito’s Bios: Biopolitics and Philosophy (Minnesota, 2008) and Communitas: The Origin and Destiny of Community (Stanford, 2009). He is the author of Wireless Writing in the Age of Marconi (Minnesota, 2006), winner of the Media Ecology Association’s 2007 Lewis Mumford Award for Outstanding Scholarship in the Ecology of Technics and and Improper Life: Biopolitics and Technology from Heidegger to Agamben (Minnesota, 2011). He also edits the series “Commonalities” for Fordham University Press and is currently completing his study of cinema and biopower titled Grace Notes:  Cinema and the Generous Form of Life.

Biopolitics: A Reader published in 2013 collects pivotal texts defining the concept of biopolitics. Opening with Michel Foucault’s coining of the term in his 1976 essay “Right of Death and Power over Life” we follow biopolitics through the edited collection as it is anticipated by Hannah Arendt and later altered, critiqued, deconstructed, and refined by major political and social theorists who explicitly engaged with Foucault’s ideas.

This blog post is abridged. A PDF of the entire interview is available here.

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