GeneWatch Vol. 27 No. 1

GeneWatch THE MAGAZINE OF THE COUNCIL FOR RESPONSIBLE GENETICS | ADVANCING THE PUBLIC INTEREST IN BIOTECHNOLOGY SINCE 1983

Volume 27 Number 1 | Jan-April 2014

Featuring: Patricia Williams on how our data defines us in the new knowledge economy Kristin Lauter on encrypting genomes (the practical way) Heather Dewey-Hagborg recreating strangers with found DNA ISSN 0740-9737

GeneWatch January-April 2014 Volume 27 Number 1 Editor and Designer: Samuel Anderson Editorial Committee: Jeremy Gruber, Sheldon Krimsky, Ruth Hubbard GeneWatch is published by the Council for Responsible Genetics (CRG), a national, nonprofit, taxexempt organization. Founded in 1983, CRG’s mission is to foster public debate on the social, ethical, and environmental implications of new genetic technologies.

The views expressed herein do not necessarily represent the views of the staff or the CRG Board of Directors.

Address 5 Upland Road, Suite 3 Cambridge, MA 02140 Phone 617.868.0870 Fax 617.491.5344 www.councilforresponsiblegenetics.org

board of directors

Sheldon Krimsky, PhD, Board Chair Tufts University Evan Balaban, PhD McGill University Paul Billings, MD, PhD Life Technologies Corporation Robert DeSalle, Phd American Museum of Natural History Robert Green, MD, MPH Harvard University Jeremy Gruber, JD Council for Responsible Genetics Rayna Rapp, PhD New York University Patricia Williams, JD Columbia University staff

Jeremy Gruber, President and Executive Director Sheila Sinclair, Manager of Operations Samuel Anderson, Editor of GeneWatch Andrew Thibedeau, Senior Fellow Vani Kilakkathi, Fellow Cover Design Samuel Anderson Editorial & Creative Consultant Grace Twesigye Unless otherwise noted, all material in this publication is protected by copyright by the Council for Responsible Genetics. All rights reserved. GeneWatch 27,1 0740-973

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Editor’s Note

Samuel Anderson

We’ve all done it, to the point that we don’t even joke about it anymore: Clicking “agree” on long, impenetrable contracts, from the wireless login at a Starbucks to, most infamously, the iTunes user agreement.

In her epic essay that leads this issue of GeneWatch, Patricia Williams brings it up – not to chide us for clicking “I agree,” or even for doing so despite feeling a bit unsettled about agreeing to something without really knowing what we’re agreeing to.

She brings it up because maybe, at least for now, most of these agreements really are essentially harmless … but the more we get used to reflexively signing on the dotted line, the less likely we are to notice what we’re signing away. What happens when we don’t even feel unsettled by this? More importantly, what happens when the party on the other side of the contract – the ones writing it – realize that we’re not paying attention?

If all of this seems old hat and not particularly alarming, check back in a couple of years – because the really alarming stuff is on its way. Does it weird you out when Internet ads seem to know a bit too much about what’s going on in your life? A good deal of our web activity comes with our tacit agreement to share what we click on, what we buy, even who we interact with. But here’s where it gets scarier: When we lick an envelope or touch the doorknob of a public building, are we giving tacit agreement to share our DNA? Heather Dewey-Hagborg (p. 17) shows us that this is anything but farfetched: Using the DNA from discarded cigarette butts, chewing gum, or stray hairs found on the subway or the sidewalk, she constructs facial likenesses of strangers.

One thing is clear from the articles on the following pages: We are passed the time when we can talk about genetic privacy as a theoretical concern.

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comments and submissions GeneWatch welcomes article submissions, comments and letters to the editor. Please email anderson@gene-watch.org if you would like to submit a letter or any other comments or queries, including proposals for article submissions. Student submissions welcome!

founding members of the council for responsible genetics Ruth Hubbard • Jonathan King • Sheldon Krimsky Philip Bereano • Stuart Newman • Claire Nader • Liebe Cavalieri Barbara Rosenberg • Anthony Mazzocchi • Susan Wright Colin Gracey • Martha Herbert • Terri Goldberg Jan-April 2014

GeneWatch Vol. 27 No. 1

4 Bigger Than Us As companies and governments come up with new ways to mine us for personal information, when does “nothing to hide” become “nothing left to hide”? By Patricia Williams 10 The Police Want Your DNA Law enforcement increasingly has power to collect, store, and use your DNA – even if you haven’t committed a crime. By Jeremy Gruber 13 A Cipher for Your Genome With homomorphic encryption, you can lock your genome in a mathematical vault – and keep retrieving information from it while it’s in there. Interview with Kristin Lauter 15 Gamete Donation (Strings Attached) What are the expectations of privacy for egg and sperm donors in the age of genomics? By Susannah Baruch 17 Stranger Visions Artist Heather Dewey-Hagborg creates portraits of strangers based on DNA from discarded chewing gum and cigarette butts … and yes, the police are working on this technique, too.

21 Genetic Privacy in Europe Public healthcare systems are collecting more data about individuals – and private companies are vying for access. By Helen Wallace 24 Very Big Brother The use of biometrics to verify identity – from DNA markers to retina scans – is quickly realizing the stuff of science fiction … including the potential for some downright dystopian side effects. By Sunil Abraham Image: S.W. Anderson

26 Baby DNA Warehousing Newborn screening saves lives – but should governments be saving newborns’ DNA without parental consent? By Twila Brase ---29 I Still Want to Know A college student writes a paper about GMO labeling – and learns much more than she bargained for. By Juanita Rios 30 Endnotes Volume 27 Number 1

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Bigger Than Us

As companies and governments come up with new ways to mine us for personal information, when does “nothing to hide” become “nothing left to hide”?

By Patricia Williams 4 GeneWatch

Jan-April 2014

Image: S.W. Anderson

How much of our privacy will be challenged by decoding the human genome is an open, evolving question. Interpreting the coded “text” of the double helix is only half the task.

Translating that information into the taxonomies of public policy requires balancing the contrasting values of scientific conventions and legal discourse.

Most obviously to most people, the indiscriminate compilation of DNA databanks here and in other countries potentially compromises not just privacy but presumptions of innocence, as well as the right to be free from unreasonable searches and seizures. This is particularly so where databases sort people using categories overlaid with biases about social history, race, genetic determinism or inborn aggression. In 2013, for example, it was revealed that police in southern Sweden had compiled a registry of over 4,000 “travellers” (or Roma people), with personal information about whole families, going back to the 1800’s. The database included no other Swedes, whatever their criminal history. Nor did this pretend to be just a list of Roma criminals – it included artists, athletes, civic leaders, and over 1,000 children, some as young as two years of age. Their only commonality was that they were Roma.1 (Sweden being Sweden, the police department involved ultimately turned itself in, reporting its own violation of a number of laws including the European Convention on Human Rights.)

In the United States, suspect profiling in largely black and Latino neighborhoods is so widely and disproportionately practiced that DNA registries are inherently racially loaded and coded, if in nominally more Volume 27 Number 1

subtle ways than Sweden’s. And in courts, there is a good deal of disingenuousness among judges who have dealt with the issue thus far. In Maryland v. King, for example, the Supreme Court characterized DNA simplistically and quite flatly as a means of identification similar to fingerprints or photographs. But of course DNA reveals much more than fingerprints or photographs – not just about ourselves but about our families. And in the future, it is likely to reveal much more.

The state of Maryland at least destroys data if it collected from an arrestee who is subsequently not convicted. That is not the case in many other states: California, for example, keeps DNA samples, even those from people merely arrested and subse-

beyond the sort of “identification” that fingerprints or photos can.

The profiling and curatorial instinct of government functionaries – from courts to police to armies – is not something to be lightly written off. For those who doubt the potential dystopian uses of genetic material, the recent film “DNA Dreams,” available on YouTube2, provides sober ground for thought. Although focused on the enormous Chinese genomic research conglomerate BGI, it highlights the porousness – indeed the evaporation – of the boundary between what we are accustomed to thinking of as public and private structures and institutions in a transnational, globalized economy.

Nor is it DNA collection alone that threatens privacy; it is the abil-

In this over-exposed new universe, there are many who insist ”I have nothing to hide.” quently released, unless and until the retention is challenged by an individual request to destroy. Yet in March of 2014, the 9th Circuit upheld California’s practice in the case of Haskell v. Harris. The court dismissed concerns about privacy, breezily dubbing buccal swabs “routine” and ubiquitous “throughout the nation.”

The swab itself was viewed as a “minor intrusion,” for the judge weighed “intrusiveness” only by the physical ease of cheek swiping; there was absolutely no consideration of the deep and lifelong intrusiveness at stake in the medical and familial information DNA may reveal, so exponentially

ity to pair that information with the planetary tracking of every other aspect of our lives. Books like Julia Angwin’s Dragnet Nation and Robert McChesney’s Digital Disconnect document the degree to which every last intimacy of our lives is accessible to strangers: through online hospital records or the trails we leave by our shedding of hair and skin, through street cameras or what our address implies about us, through our use of cellphones, webcams, Facebook, fitness wristbands, and credit cards.

In addition to the information that is gathered in legal or unregulated ways – say by neighbors, employers, GeneWatch 5

corporations, and governments – we also contend with illegal or ethically vexed invasions from a fairytale-sounding litany of anonymous grifters, hackers, trolls, cookies, and infinitely-proliferating forms of malware.

Despite this, we sigh a bit, shrug with the cliché of it all – there are no secrets anymore! – and press “I agree” without thinking when purchasing everything from iTunes to banking services to airline tickets.

Agree to what? is an inquiry routinely evaded, a closed door unshadowed by curiosity.

So it should not be a complete surprise when those unread terms come back to haunt us in seriously constraining ways. When the Microsoft corporation recently suspected an employee of stealing software code protected as trade secrets, it simply combed through users’ private emails and instant messages – not only those of the employee, but of a journalist who had blogged about communications received from the employee. Microsoft claims it was authorized to do this because of the terms of service to which all Hotmail accounts are subject. The New York Times reported that Microsoft’s actions were technically “within the boundaries of the Electronic Communications Privacy Act, which allows service providers to read and disclose customers’ communications if it is necessary to protect the rights or property of the service provider.”

This is indeed a relatively unregulated realm, stretching the interpretive bounds of traditional private contract law, creating fairly dubious presumptions that consumers have choice in the matter, and have willingly given up their privacy rights in exchange for the service of the internet. Microsoft’s power invades not only individual privacy but the 6 GeneWatch

ability of journalists to protect their sources. As civil rights attorney Nate Cardozo observed, “To see Microsoft using this right to essentially look through a blogger’s email account for evidence of wrongdoing and then turn it over on a silver platter for law enforcement, it is extremely undesirable…”3 Whether we bother to read the invisible contracts that govern so much of our lives or not, the truth is that almost all service providers leave consumers with little in the way of privacy rights – it’s just rare that a company like Microsoft admits it so openly. As Edward Wasserman, Dean of UC Berkeley’s Journalism School, stated, “Microsoft essentially decided that whatever privacy expectation that its own customers supposedly had was basically a dead letter. It simply decided that in its own corporate interest, it can intrude on a person’s email.”

This very broad ability should be considered against the backdrop of how such a power might be used in the context of DNA dragnets conducted not just by governments but by global corporations with accountability to no interest but their own private profit. If most of us are at least vaguely aware of the potential for misuse when genetic data is taken by law enforcement agencies, we seem entirely willing to just give it away through the easy carelessness of such unread agreements with ancestry tracking services, direct-toconsumer health companies and so called “spit parties.”

In this over-exposed new universe, there are many who insist, “I have nothing to hide.” But the law’s protection of privacy is not dependent upon the felt necessity to hide. Privacy is a space as well as an idea. It is the distance we give each other to be happy hogs wallowing in our own mud. It

is the shelter we need to be creative, to think or write or compose on our own terms, to say nothing of outside the box. It is the freedom to make mistakes and to improve on first efforts. It is the ability to decide when to publish an observation or whether to broadcast a considered narrative of our own experience. On a personal level, it is the right to hold at bay the prurient humiliation or judgmental gaze of others who might desire to catch us literally or figuratively with our pants down. And as a matter of citizenship, it puts distance between us and the potentially totalizing power of government functionaries who may be motivated – however beneficently or banally – to regulate political thought by acting as arbitrary censors, just-curious home invaders, authoritarian gatekeepers, or whimsical jailers.

The concept of autonomy is central to American – and most Western – juridical and political constructs of democracy. As largely-invisible data aggregators amass evidence of our every purchase, movement and heart beat, our identity as unique individuals will become subsumed to the much greater emphasis placed on our relation to some spectrum of actuarial expectation. Increasingly we will be advertised to, deflected from, assessed for criminality, disease probability or financial risk, assigned emotional valence, assorted, tagged, boxed, confined.

On top of this, social media networking has not lived up to its promise of replacing traditional intrapersonal communities, emerging instead as a force that fragments human engagement as much as it coheres. Along with global media monopolies, it too often herds erstwhile polities into imaginary “teams” and embattled formations of hype, tabloidization, disinformation and fear.

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All these forces conspire to create a world and a citizenry of fewer and fewer upwardly mobile “speaking subjects.” Instead we become locked into a shell-like status fixed by carelessly-composed data sets, as well as un-interrogated correlations made by invisible bureaucrats. Without oversight or due process, it will be harder and harder to challenge, never mind find out why, we came to be labelled “a this” rather than “a that.” A flight risk or a cancer risk? A quick learner or a big spender? Like it or not, willingly or not, these are the identity groupings by which we will be judged and from which we will struggle vainly to escape.

However reductive, these markers of our identity are valuable as intellectual property; they become monetized nuggets in the “knowledge economy” – little Lego pieces of data used to construct the avatars and facsimiles that stand in for us in a world repositioned as efficiently heuristic rather than participatorily democratic. Genes, cells, fingerprints, blood or isolated phenotypes become “immortal” ciphers, or fixed character properties. Governments, pharmaceutical companies, and, yes, Microsoft, attribute to particularized pieces of ourselves a separate life that engulfs or becomes more important than our complex embodied selves.

Law professor Jessie Allen, who authors the blog “Blackstone Weekly,” a contemporary take on 18th century English jurist William Blackstone, observes that what is happening now might be very similar, as a conceptual matter, to the beginnings of the

corporation. In his “Commentaries on The Laws of England,” Blackstone described early entrepreneurs’ concern with the basic limits of their own humanity: People die. That’s bad for business. The invention of the corporation effectively created an immortal legal subject, untethered to human frailty. That immortality is, in effect, a way of extruding from particular bodies a use value that can be assigned to the ether of a legal fiction – a fiction that “speaks” through articles of incorporation, and whose profit may be divvied up among distant, abstract shareholders.

There is a similar process of dispossession in the mining of our habits, our bodies, our preferences and

“moral vision of the person and of social life that emphasizes consumer-style choice, contract-modeled collaboration…”4 This reconfiguration of the righted subject into what is effectively instantiation of the person as corporation has two implications for how privacy is perceived.

First, the value of the individual is rewritten as alienable rather than inalienable, as cost-benefit, profitmotivated and value-added. (This explains, I suppose, the conversation I overheard among a group of high school students on the subway, busily working on a homework assignment in which they had been asked to “brand” themselves, to give that brand a catchy name, and to sell that brand in no more than five sentences, because with more than five sentences “you lose your audience.”)

Second, corporatized people don’t need healing; and indeed the rules of corporate law bend away from the idea of justice as individually remedial or personally restorative. A corporate being looks to the law not for civil rights but for the predictive, the risk-minimizing, the future-controlling immortality of guaranteed return.

Through that lens, any legal system based on consent, or on individual cases and controversies, begins to look cumbersome in comparison to the speedy efficiency of stochastic models. Consider again the Microsoft case: how we in the industrialized world who conduct most of our work and play – indeed our entire lives – with the assistance of computers, are always pressing little buttons that say “I agree” to terms of service, conditions of usage, and privacy limitations that we never

As largely-invisible data aggregators amass evidence of our every purchase, movement and heart beat, our identity as individuals will become subsumed to the much greater emphasis placed on our relation to some spectrum of actuarial expectation.

Volume 27 Number 1

dispositions. It’s framed as “not about us,” at least as individuals – even though it may be used to powerfully confine us as individuals, to mark us even as it can rarely be claimed by us.

It’s rather about one’s group, one’s place, one’s “anonymized” metrics.

Along with this expansion of Big Data, there is a shift, as described by legal academics David Singh Grewal and Jedediah Purdy, away from liberalism’s vaunting of the autonomous legal subject and toward a neoliberal

GeneWatch 7

bother to read. Consider how ritualized that behaviour has become, the act of consent rendered thoughtlessly, invisibly performative in a way that “disappears” any need for negotiated participation. The surface language of contract effectively marks only a site of erasure.

It is not as though the terms of those agreements do not exist, however. If one bothers to print off the actual contracts to which those little buttons refer, the monolithic imbalance of bargaining power rises before one, like the dark cliffs of Sauron’s

YOUR USE OF THE SERVICES ARE AT YOUR SOLE RISK. THE SERVICES ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS. 23ANDME EXPRESSLY DISCLAIMS ALL WARRANTIES OF ANY KIND, WHETHER EXPRESS OR IMPLIED, INCLUDING, BUT NOT LIMITED TO, THE IMPLIED WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, AND NONINFRINGEMENT. (2) 23ANDME MAKES NO WARRANTY THAT (a) THE SERVICES WILL MEET YOUR REQUIREMENTS; (b) THE SERVICES WILL BE UNINTER-

WILL BE SOLELY RESPONSIBLE FOR ANY DAMAGE TO YOUR COMPUTER SYSTEM OR LOSS OF DATA THAT RESULTS FROM THE DOWNLOAD OF ANY SUCH MATERIAL. (4) NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU FROM 23ANDME OR THROUGH OR FROM THE SERVICES SHALL CREATE ANY WARRANTY NOT EXPRESSLY STATED IN THE TOS. (5) YOU SHOULD ALWAYS USE CAUTION WHEN GIVING OUT ANY PERSONALLY IDENTIFYING INFORMATION ABOUT YOURSELF OR THOSE FOR WHOM

castle walls in The Lord of the Rings.

Often running to thirty or forty pages of language that leave corporations with no responsibilities and individual consumers with no rights, the utter lack of public engagement with such terms means that there is virtually no consumer movement or pushback to the accumulated wealth being mined from the data that most such contracts assign to huge entities like Google or Apple or Amazon.

Here is just one paragraph from the agreement that gene-tracking company 23andMe proffers:

RUPTED, TIMELY, UNFAILINGLY SECURE, OR ERROR-FREE; (c) THE RESULTS THAT MAY BE OBTAINED FROM THE USE OF THE SERVICES WILL BE ACCURATE OR RELIABLE; (d) THE QUALITY OF ANY PRODUCTS, SERVICES, INFORMATION, OR OTHER MATERIAL PURCHASED OR OBTAINED BY YOU THROUGH THE SERVICES WILL MEET YOUR EXPECTATIONS AND (e) ANY ERRORS IN THE SOFTWARE WILL BE CORRECTED. (3) ANY MATERIAL DOWNLOADED OR OTHERWISE OBTAINED THROUGH THE USE OF THE SERVICES IS DONE AT YOUR OWN DISCRETION AND RISK AND THAT YOU

YOU HAVE LEGAL AUTHORITY. 23ANDME DOES NOT CONTROL OR ENDORSE ANY ACTIONS RESULTING FROM YOUR PARTICIPATION IN THE SERVICES AND, THEREFORE, 23ANDME SPECIFICALLY DISCLAIMS ANY LIABILITY WITH REGARD TO ANY ACTIONS RESULTING FROM YOUR PARTICIPATION IN THE SERVICES.

“YOU EXPRESSLY ACKNOWLEDGE AND AGREE THAT: (1)

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…WITHIN THE LIMITS ALLOWED

BY APPLICABLE LAWS, YOU EXPRESSLY ACKNOWLEDGE AND AGREE THAT 23ANDME SHALL NOT BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL,

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OR EXEMPLARY DAMAGES, INCLUDING BUT NOT LIMITED TO, DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF 23ANDME HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES), RESULTING FROM: (a) THE USE OR THE INABILITY TO USE THE SERVICES; (b) ANY ACTION YOU TAKE BASED ON THE INFORMATION YOU RECEIVE IN THROUGH OR FROM THE SERVICES, (v) YOUR FAILURE TO KEEP YOUR PASSWORD OR ACCOUNT DETAILS SECURE AND CONFIDENTIAL, (d) THE COST OF PROCUREMENT OF SUBSTITUTE GOODS AND SERVICES RESULTING FROM ANY GOODS, DATA, INFORMATION, OR SERVICES PURCHASED OR OBTAINED OR MESSAGES RECEIVED OR TRANSACTIONS ENTERED INTO THROUGH OR FROM THE SERVICES; (e) UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OR DATA; (f ) THE IMPROPER AUTHORIZATION FOR THE SERVICES BY SOMEONE CLAIMING SUCH AUTHORITY; or (g) STATEMENTS OR CONDUCT OF ANY THIRD PARTY ON THE SERVICES.

By the same token, the popularity of massive online education forums, or so-called MOOCs, can contain very troubling terms vis a vis privacy interests as well as the transferred wealth of data: Platforms like EdX, while billing themselves as “free,” require participants to consent to being research subjects for neuroscientific studies about how students learn, or as the privacy terms as of March 27, 2014 (since all terms are “subject to change at any time”) put it: “…for purposes of scientific research, particularly, for example, in the areas of cognitive science and education.”

To that end, EdX and other MOOCs have begun to publish research studies based on quietly mining the Volume 27 Number 1

learning patterns of what is, in effect, its online global laboratory of students: “…[W]e sometimes present different users with different versions of course materials and software. We do this to personalize the experience to the individual learner (assess the learner’s level of ability and learning style, and present materials best suited to the learner), to evaluate the effectiveness of our course materials, to improve our understanding of the learning process and to otherwise improve the effectiveness of our offerings. We may publish or otherwise publicize results from this process, but, unless otherwise permitted under this Privacy Policy, those publications or public disclosures will not include Personal Information.”

Hmm. “Unless otherwise permitted…”? As a student of contract law, I like to hope that all such terms would be interpreted through a filter of implied reasonableness and conscionability, yet that is not necessarily the jurisprudential trend. Here is just one other paragraph from EdX’s terms of service: License Grant to edX. By submitting or distributing User Postings to the Site, you hereby grant to edX a worldwide, non-exclusive, transferable, assignable, sublicensable, fully paid-up, royalty-free, perpetual, irrevocable right and license to host, transfer, display, perform, reproduce, modify, distribute, re-distribute, relicense and otherwise use, make available and exploit your User Postings, in whole or in part, in any form and in any media formats and through any media channels (now known or hereafter developed).

will divulge. This is a remarkable moment, surely, with technology transforming human relations as profoundly as did the printing press.

Technology is progressing so rapidly and sweepingly that it is almost impossible not to allow the imagination free reign, to push past what the science actually reveals. It is hard to resist romanticizing its possibility, as enhancement beyond all known history. We are headed towards an era of superhumans, mechanical Übermensches! We cannot fail! Throw out the old! Bring on the bionics!

But I remain intrigued by that notion of neoliberalism as pushing humans into corporatized boxes and those boxes as ciphers for the ancient hubris of sought immortality – the immortality of a figurative body; the crafting of a fictional, controllable or ideal mechanism that can be cobbled together from pieces and parts. Alas, I do not believe in immortality. There is only the intimately creative integrity of an embodied self. If we fail to nurture that generative space, of which privacy is the guardian, we put distance between heart and head, and our flourishing becomes unmoored from any investment in the self that is not situated in a global market place of invisible, soul-crushing number crunchers. nnn Patricia Williams, JD, is a Professor of Law at Columbia University and a member of CRG’s Board of Directors. She writes a monthly column for The Nation called “Diary of a Mad Law Professor.”

I began this essay by framing the issue as one of privacy, in particular genetic privacy; let me place that concern against the cultural backdrop of our general, if radically rosy, technophiliac faith in the inevitable good of what genetic information GeneWatch 9

The Police Want Your DNA Law enforcement increasingly has power to collect, store, and use your DNA – even if you haven’t committed a crime.

By Jeremy Gruber In 1987, an unknown assailant broke into a Florida woman’s home in the middle of the night. He robbed her and raped her at knife point.

Semen from the crime scene was matched to DNA samples taken from Tommie Lee Andrews, a serial rapist, and the case became the first instance of DNA use for a criminal conviction in the United States. At that time, no state had a DNA database.

Soon thereafter, states began establishing DNA databases for violent offenders, primarily and in some cases exclusively focused on narrowly targeting convicted sex offenders; Virginia became the first such state in 1989 and all 50 states had created such databases within ten years. In 1994, Congress passed the DNA Identification Act, authorizing the FBI to establish a national DNA database: the Combined DNA Index System, or CODIS. CODIS was originally used for only this class of convicted offender.

Today, as of March 2014, the United States has the largest DNA database in the world, with 10.7 million offender profiles and 1.8 million arrestee profiles.1 This massive growth can be attributed to the ever expanding classes of individuals and “at risk” subgroups whose DNA state legislatures and the Federal government have authorized law enforcement to collect and store, including felony and many misdemeanor convictions, parolees and felony arrestees. Some states have gone even further. For example, New 10 GeneWatch

York’s creation of an “all crimes” database last year, including individuals convicted of minor crimes such as speeding, is expected to add up to 25,000 more new profiles a year.

In recent years, though, the greatest increase in the rate of profiles entering U.S. DNA databases can be attributable to more and more states collecting DNA upon arrest. Today a majority of states (twenty-eight) now collect DNA upon arrest and many more have already introduced legislation in response to the U.S. Supreme Court’s 5-4 decision in Maryland v King that found, at least in most instances, DNA collection upon arrest to be constitutional. This, despite the fact that DNA is not (and cannot) actually be used to verify identity upon arrest, laying bare the true purpose of its collection to be investigative.

Because only a fraction of those who are arrested are ultimately charged and convicted, however, this practice necessarily permits the government to collect DNA from innocent people. If you think as a law abiding citizen this has nothing to do with you, think again. In a pending California case, Haskell v. Harris, a suit was filed on behalf of Lily Haskell and three other plaintiffs who were forced to turn over DNA samples to police after being arrested at a peace rally in San Francisco. Although she was released without any charges, her DNA profile is now stored on CODIS. A recent ruling by the 9th Circuit Court of Appeals supported this practice in light of the Supreme

Court ruling in King; though civil liberties advocates are returning to the lower courts to continue to fight the decision. For now, though, the practice remains intact and even applies to victims of domestic violence who are arrested after defending themselves, people wrongfully arrested due to police misconduct, someone who has written a bad check, and people arrested during political demonstrations.

Moreover, bigger databases and expanded collection practices necessarily increase the chance that innocent people will have their DNA taken, used and stored by the state purely because of false matches and error, which can occur by chance or through poor laboratory/police practice. Across the country, forensic DNA labs have had problems with cross-contamination of samples, mislabeling, misinterpretation of samples and in some cases outright fraud. For instance, an analyst for the New York City medical officer’s office was caught faking the results of control samples. The consequences can be severe. Consider the case of Steven Myer, an Ohio man who was indicted for burglary based solely on DNA evidence. He spent seven months in jail before being released after subsequent retesting proved it was not his DNA sample. That the government would obtain DNA from any innocent person is disturbing, but the practice visits a special and severe harm upon minorities. Members of minority groups are arrested Jan-April 2014

Image: S.W. Anderson

in disproportionate numbers, and a disproportionate percentage of innocent arrestees are likely to be minorities.

DNA can be an effective tool to help law enforcement convict the guilty and exonerate the innocent, but that clear benefit has yet to be balanced, from both a policy and legal standpoint, with the ever intrusive nature of obtaining and storing so many DNA samples and the resulting profiles. Indeed, the balancing can be particularly difficult because we have so little data as to just how effective DNA collection by law enforcement actually is in convicting criminals. The FBI has never allowed Volume 27 Number 1

CODIS to be studied by independent experts. Moreover, states and the Federal government – shockingly – do not track convictions based upon DNA, but rather matches between DNA profiles on the database. These can be matches between a newly loaded DNA profile from an individual and the database of stored crime scene DNA profiles, or between a newly loaded crime scene DNA profile and the stored DNA profiles of individuals. Of course, matches are not convictions. As DNA databases get larger, many matches can occur between a crime scene DNA profile and people who were at the scene but did not commit the crime, including

passers-by, family members and victims of the crime. The frequency of matches can, then, necessarily be high, and it’s these “compelling” numbers that are most often used to promote greater and greater database expansions and collection practices without the legitimate statistical support they should require.

We do have better statistics from countries that have already gone down this road. The United Kingdom has dialled back their DNA database practices after public outcry and a condemning decision from the European Court of Human Rights. What the U.K. discovered is that as its database ballooned in size there was no GeneWatch 11

statistical increase in the number of crimes detected using DNA, because most people are unlikely to commit serious crimes for which DNA evidence might be relevant.

What we do know is that the collection of DNA samples raises profound and far-reaching privacy concerns.

DNA is a particularly robust form of personal information that can reveal not only identity, but highly personal health information, ancestry, and paternity. And our understanding of and uses for genetic information are only going to multiply as genetic research continues.

Arguments that compare DNA to fingerprints seemingly ignore two crucial truths. Firstly, the thirteen noncoding loci the government uses to create a “profile” in CODIS perform significant genetic functions and will likely provide information beyond identification as they are understood better. The European Court of Human Rights, in finding against the U.K.’s expansion of its database practices found that DNA profiles could be used to distinguish ethnicity, as well as determine family members.2 Secondly, every government entity that maintains a DNA database maintains not only the profiles created from the DNA but also stores the actual biological samples themselves – indefinitely. This requirement is explicitly laid out in FBI regulations and the laws of thirty-seven states (the remaining states do not require retention of samples but do not prohibit it either).3 Indeed, while the focus is often on DNA profiles, there is very little law and regulation of how such biological samples are to be handled and stored. Even for individuals whose DNA was collected upon arrest and who were later acquitted, DNA profiles and samples are often retained since most expungement 12 GeneWatch

procedures are complicated and costly. More than twenty years ago, the National Academy of Sciences recommended against this practice and just last year the Presidential Commission for the Study of Bioethical Issues affirmed it when they found: The best way to minimize privacy risks is to minimize the amount of sensitive information the government collects and retains in the first place. Destroying DNA samples after analyses would reduce the risks to individuals’ genetic privacy without compromising law enforcement’s capabilities.4

DNA databases in the U.S. have already expanded beyond law enforcement use. Seventeen states allow the use of DNA for non-law enforcement purposes including population statistical databases and seven states allow such databases to be used for research purposes.5 The ability to combine CODIS data with other publicly available data is likely to grow. And it’s not hard to imagine, as we develop more and more private and public databases of genetic information, that law enforcement won’t try to access them.

We are not only building bigger and bigger databases, but expanding collection practices as well. Police are now using DNA dragnets, where DNA is taken from a selected population without individualized suspicion or of individuals who happen to live near a crime scene or who happen to match a certain physical profile. Some police departments are operating their own “off grid” DNA databases with little oversight and police and prosecutors in some cities and counties (such as Orange County, CA) are taking DNA “voluntarily” from individuals arrested for petty crimes in exchange for dropping charges against them.

Familial searching, a deliberate search of a DNA database conducted for the intended purpose of potentially identifying close biological relatives to the unknown forensic profile obtained from crime scene evidence, is becoming more widespread. Such searches virtually guarantee that DNA databases will create suspects out of innocent people, and because of the composition of DNA databases, those innocent suspects will disproportionately be people of color. Crime scene DNA has also been used to predict physical characteristics, such as certain shades of hair color, and to draw broad conclusions about genetic ancestry. Concerns have been raised about these predictions being used for crude profiling, potentially racially tinged, which have led Germany and several U.S. states to bar their use by police.

Even so, new research on “molecular photofitting” (producing a crude image of a suspect’s face from DNA left at the crime scene) suggests that such reconstructions may soon be possible, giving police another investigative tool that could result in wrongful arrests and unjustified searches.

We are at a critical juncture in the United States, as law and policy are rapidly allowing law enforcement greater access to Americans’ DNA with limited public discussion and debate. Continued expansion of the power of law enforcement to collect and store DNA must be guided by a transparent debate that balances legitimate public safety concerns with human rights and privacy interests and that is honest about the value of forensic DNA, recognizing the limited benefits of expansion beyond likely re-offenders. nnn Jeremy Gruber, JD, is President of the Council for Responsible Genetics.

Jan-April 2014

A Cipher for Your Genome With homomorphic encryption, you can lock your genome in a mathematical vault – and keep retrieving information from it while it’s in there. interview with

Kristin Lauter

Kristin Lauter, PhD, is a Principal Researcher and Research Manager for the Cryptography group at Microsoft Research. She has been working on practical homomorphic encryption for several years and was a coauthor of the breakthrough paper “Can Homomorphic Encryption be Practical?”

GeneWatch: How is homomorphic encryption different from other encryption technologies?

Kristin Lauter: The primary new functionality enabled with homomorphic encryption is the ability to compute on encrypted data. This is very important for things like outsourcing storage and computation

of data. The idea is that when using homomorphic encryption, the data owner – let’s say it’s a consumer or an enterprise – could encrypt the data locally and keep the key. Then they can upload that data to the cloud, and if they used homomorphic encryption, that data can still be operated on by the cloud and the encrypted results are available from the cloud to the data owner or anyone the data owner trusts to share the encryption key with. So it really allows a whole new functionality on encrypted data.

The problem with many other types of encryption is that it makes data secure at the expense of making it unusable. Can you say anything more about what that means?

With standard encryption systems, after you encrypt the data there is very little ability to do anything with it. For example, AES is the government’s standardized block cipher.

When you encrypt something with AES, you should not be able to distinguish anything about the original data or operate on it in any way which gives meaningful results. In the last ten years or so there has been a push in the field of cryptographic research to invent techniques that allow you to encrypt data and maintain its privacy but still get some functionality out of it. Homomorphic encryption is a very general and powerful tool to allow computation on encrypted data.

Image: S.W. Anderson

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Did you have encryption of genetic information in mind while working on this, or did that come up later?

Going back a couple of years, when we started on this work, my main focus was practical homomorphic encryption, as opposed to what people call fully homomorphic encryption.

Practical homomorphic encryption focuses on computing certain highvalue functions, ones that are more commonly used in practice. So we started with basic functions, statistical tools that people often want to compute on data, and our first goal was to show that if you restricted the functionality – if you decided ahead of time what kind of functions you wanted to compute on the data – you could do computation on encrypted data much more efficiently. Some of the original functions that we computed were just things like averages and linear regressions. As soon as we started to get into those tools, we thought about where they would be valuable, and genetics and genomics was one of the first areas that we thought about. In fact, Bill Gates had a long standing interest in computation on encrypted data and he asked us about that, so it was a high value target from the beginning.

So what are you working on now?

We’ve been looking at some of the basic genomics algorithms for pattern matching and substring matching. We looked at some of the queries that are made on genomic databases – basic functions, like genotype counts – and started working on using the ability to do those counts on homomorphically encrypted data, and on some more complex algorithms. These are all basic algorithms – not the most cutting-edge research 14 GeneWatch

in genomics, but the most basic algorithms, the ones which would most frequently be performed. And what we found is that when you take algorithms that have a low degree of complexity, practical homomorphic encryption can often be suitable for genomic data.

It sounds like you’ve been working with researchers or practitioners in genomics to see what would be most useful – or have you been focusing first on what’s most challenging?

No, we’re starting with what is the most useful. We started working with Yaniv Erlich at the Whitehead Institute, whose group was looking into issues of genetic privacy, but from the other direction, exploiting databases where genomic data is supposedly “de-identified” and reidentifying the data. Within Microsoft Research we’ve also been working with David Heckerman’s eScience research group at UCLA. Have you been thinking about other applications for practical homomorphic encryptions?

Absolutely. In our first paper we focused on the issue of medical records being hosted in the cloud. There’s a lot of value in medical records being hosted in a cloud – for example, if someone moves, they can still have access to their medical records without having to go back to their original doctor. However, the privacy issues are tremendous, and also the liability issues for health care providers.

So the idea of having an encrypted medical record system is very attractive – the idea that the patient and the doctor could control access to different parts of this record and selectively share it with others, be it family members, other doctors, or

lab technicians. One of the things that we incorporated early on was the ability to search the medical records, and using homomorphic encryption, the ability to do basic computation on that data without sacrificing its security.

For example, as health monitors become more prevalent – imagine you have health monitors uploading encrypted data to a medical record hosted in a cloud. And as the data is continually uploaded, that’s potentially a lot of data for a health care professional to have to look at for each patient. So you could have a synopsis of the data – averages, alerts, or other computations – so that periodic digests could be made available to the doctor.

It seems like a very high-value scenario. It’s an area where people care about their privacy, and it’s an area where having a service hosted in the cloud could be very valuable both for patients and for doctors.

What work is left to be done on practical homomorphic encryption?

Homomorphic encryption is just one of the techniques that we’re focusing on, but we have put a tremendous amount of energy into it the past few years because we see it as high value, and it’s just on the verge of becoming practical – it’s already practical on small data sets and relatively low complexity functions. When you look into the future, what we’ll be pushing on is making this type of homomorphic encryption more and more practical, adding functionality and researching ways we can take the highest-value functions and make them scalable and practical. nnn

Jan-April 2014

Gamete Donation (Strings Attached) What are the expectations of privacy for egg and sperm donors in the age of genomics?

By Susannah Baruch

Reproduction is not genetically simple. For every set of biological parents, trillions of possible genetic combinations are possible in each offspring. We live in an era of dramatically increasing knowledge about the human genome. The possibility of a “$1,000 genome” – full genetic sequencing for any individual who seeks it – is held out as a possibility in the near future.

How does our heightened expectation to know more about our genetic makeup affect third party reproduction, where a gamete donor – an egg or sperm donor – accounts for half of a child’s genetic makeup?

Since long before this age of genomics, prospective egg and sperm donors have been subjected to a barrage of questions about their backgrounds. Recipients can often choose the donor who has the background, education, talents, or looks they most desire. Some recipients try to have a child who most closely resembles them; for example, if sperm donation is needed and the recipient father is Italian, tall, and artistic, the parents may look for a sperm donor with at least some of those characteristics.

We’ve all heard about the occasional advertisement for young superstar egg donors – say an Ivy League graduate with blond hair and athletic talent.

Although views differ as to the Volume 27 Number 1

appropriateness of these selective searches for gametes, a new question is on the horizon: Can I ask to see your genome before I pay you for your gametes? Should egg and sperm donors be entitled to genetic privacy?

Typically the detailed medical history required of egg and sperm donors includes questions about genetic abnormalities or diseases in the family. But the days when everyone

knew their own health risks solely from their family history are long gone. Today there are tests available that reveal carrier gene variations that may lead to the presence of disease in an offspring if the other biological parent carries the same mutation. Other genetic variants may indicate that an individual has an increased risk of developing a range of

diseases, both common and rare.

Already, the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technologies (SART) recommend genetic screening of donors in accordance with current guidelines on preconception testing from the American Congress of Obstetricians and Gynecologists (ACOG) and the American College of Medical Genetics and Genomics (ACMG).

In general, these recommendations for genetic screening are based on ethnicity. All donors should be tested for the presence of cystic fibrosis (CF) mutation.

Donors of Asian, African, and Mediterranean descent should be screened for sickle cell trait and thalassemia. For donors of Ashkenazi Jewish background, a panel of tests includes Tay-Sachs disease, Canavan disease, familiar dysautonomia, Gaucher disease, and others.

In the general population, couples planning a traditional pregnancy are supposed to be counseled about this sort of screening before conception.

When it comes to egg and sperm donors, it is much less clear how often counseling, screening, and genetic testing actually take place.

In recent years there have been news stories and anecdotal reports of children conceived with donated sperm who developed serious genetic conditions apparently inherited from GeneWatch 15

the donor. The illnesses include cystic fibrosis, heart defects, spinal muscular atrophy and neurofibromatosis type 1. Particularly because sperm donors can be the biological father to multiple children, these cases cause alarm that other children – now or in the future – may be at risk.

There is no requirement for recipient parents to notify the sperm bank of genetic or other disease once a child is born. Even if they do, sperm banks may not have updated records that would allow them to contact previous recipients. Still, as a result of the recent cases, some of the larger sperm banks are working together to create a national donor gamete registry, in the hopes that information can be more easily reported and shared.

This area of practice, just like preconception screening in the general population, is clearly a work in progress. More clinics and programs need to use genetics-trained professionals to counsel and educate individuals in order for screening to take place as recommended.

Beyond those few tests recommended by ASRM and ACOG, many more genetic tests are available that reveal an individual’s level of risk for a myriad of diseases – risks that may be passed on to offspring. What if a prospective recipient wishes to know more about a donor’s genetic makeup than the recommended screening for serious diseases? ASRM has said that additional testing may be offered by individual programs or “may be requested by the recipient couple.”

Imagine a man and woman in their early 30s, trying to conceive. Because of their particular fertility issues, their reproductive endocrinologist recommends that they use donor oocytes. This couple, as it happens, know a fair amount about their own genetic makeup. The man’s mother and aunt both died very young of 16 GeneWatch

ovarian cancer, so although he has not had specific genetic testing for the BRCA mutations which convey an elevated risk of breast and ovarian cancer, family history alone reveals that he may pass along an elevated risk.

What information is appropriate for this couple to seek from an egg donor?

Can they choose a donor based on her family history free of breast and ovarian cancer, because they want to minimize the chance of an offspring inheriting an elevated risk from both sides? Almost certainly. But should they be able to seek a donor who can produce a genetic test result that is negative for the BRCA genetic mutation? And should they be able to provide more compensation to a donor who is willing to undergo a test?

A recent set of recommendations from ASRM and SART takes the position that it is not appropriate to test gamete donors for adult onset conditions such as cancer predisposition or risk, or Huntington disease, without full consent of the donor and formal genetic counseling. These are diseases where testing the donor to get information that the recipient wants would give meaningful information about the donor’s own risk of the disease, information the donor may not want to have. And the notion of providing additional compensation to a donor willing to have the genetic test that ASRM and SART say may be inappropriate raises serious questions about the notion of informed consent.

On the other hand, one reason for using an egg donor is when a woman is affected by or the carrier of a genetic disease who would prefer not to pass the disease to her offspring. Although these cases often arise when it has not been possible to identify the genetic mutation causing the

disease, there may be circumstances when the prospective mother seeks an egg donor because she does not want to use pre-implantation genetic diagnosis.

Imagine a woman has lost family members to early-onset Alzheimer’s disease, which has a genetic component. She is adamant she does not want to have the genetic test that would tell her whether or not she herself will get the disease. Using an egg donor would be one way to be sure that, whether or not she herself has the mutation, her child will not.

But here too, while a couple may certainly scour a donor’s family history for evidence of Alzheimer’s disease or other forms of dementia, it is not farfetched to imagine a potential recipient who would rather “be sure” that the donor’s genome does not include the mutation for the disease.

Finally, note that the norm is changing. Despite the limited number of tests recommended by ASRM and ACMG, already a number of fertility specialists are recommending that patients avail themselves of a $350 “Universal Genetic Test” marketed by Counsyl. This product includes more than 100 carrier tests.

Not surprisingly, a few donor programs are requiring egg and sperm donors to have this test – and advertising it as evidence of the rigor of their screening requirements. Clearly, as genetic testing options continue to grow, so too will the demand for donors to undergo more testing and questions about appropriate testing for donors. nnn Susannah Baruch, JD, is a policy consultant on genetics and reproductive health in Washington, D.C.

Jan-April 2014

Artist Heather DeweyHagborg creates portraits of strangers based on DNA from discarded chewing gum and cigarette butts ‌ and yes, the police are working on this technique, too.

Stranger Visions

All images courtesy of Heather Dewey-Hagborg In Stranger Visions, artist Heather Dewey-Hagborg creates portrait sculptures from analyses of genetic material like hair, fingernails, chewing gum and cigarette butts, collected in public places. Working with traces strangers unwittingly leave behind, Dewey-Hagborg calls attention to the impulse toward genetic

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determinism and the potential for a culture of genetic surveillance.

Beginning with a single hair that captured her imagination, DeweyHagborg set out to learn just how much she could find out about someone from a discarded forensic artifact.

Working at Genspace, a community laboratory in downtown Brooklyn, she became an amateur biohacker, learning the tools of forensic science in a thoroughly unconventional way.

Working from published research she was able to create approximations, sketches of the individuals who left their DNA on the subway, on a sidewalk or in a public restroom.

Traits like eye and hair color, gender, ancestry, complexion, tendency to be overweight, freckles, and a handful of facial landmarks combine to create a speculative portrait, pointing toward the already emerging police practice known as “forensic DNA

GeneWatch 17

phenotyping� - the determination of appearance from DNA evidence.

Stranger Visions has stirred international controversy, landing the artist in policy discussions and biotechnology advisory panels in addition to art and science exhibits around the globe. In addition to questions of

18 GeneWatch

biological surveillance, she hopes the work embodies more complex questions as well, such as the ongoing quest to discover genetic foundations of race, and the lack of regulation of this technology in a police and corporate context. Dewey-Hagborg also sees potentially positive uses of this

type of technology, in the attempts to give faces to unidentified victims, ancient remains, and science education.

For more about Stranger Visions and Dewey-Hagborg’s other projects, visit deweyhagborg.com. nnn (more images on following pages)

Jan-April 2014

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Jan-April 2014

Genetic Privacy in Europe Public healthcare systems are collecting more data about individuals – and private companies are vying for access.

By Helen Wallace

Genetic privacy in Europe is under threat as commercial companies seek to access electronic medical records held in national healthcare systems and to combine this data with individuals’ whole genomes, all without their knowledge or consent. The aim is to make personalised risk assessments which can be used to market medicines and other products directly to consumers, vastly expanding the healthcare market. Policymakers are being lobbied to subsidize construction of these databases with taxpayers’ money as a public-private partnership.

Lobbyists aim to seek consent only after the databases have been built and the risk assessments have been calculated, at the point of feedback of these assessments to the individual.

Because genomes act as biometrics – linking online data to an individual’s physical person – other data will be connected to this system in the future, including government data (such as a person’s use of social services and their education records) and online data such as search histories and social media. If these databases go ahead, it will also be possible to identify a person’s genetic relatives and their heath and other data.

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Democratic debate about these plans has been limited as companies seek to set the rules before the general public become aware of the proposals or their consequences. However, awareness is now growing and it is likely that over the coming months debate over the privacy of genetic

U.K. Government will backtrack from plans to scoop up the medical records of everyone that uses the National Health Service in England and hand the data, without people’s knowledge or consent, to companies like Google; • how a pilot project to link genomes with health data in England (the 100,000 Genomes project) will be governed; and • what safeguards will be provided for health and genetic data from EU citizens stored by U.S. internet companies, in the wake of the revelations made by Edward Snowden about snooping by the U.S. National Security Agency.

and health data will intensify. Questions include: • whether a new EU Data Protection Regulation will be adopted to protect the privacy of European citizens; • whether (and to what extent) the

At the same time, a new EU In Vitro Diagnostics Regulation is being developed which will determine the extent that claims made about personalised health risk assessments and genetic tests are regulated, and whether or not medical supervision and counselling will be required.

New privacy protections On March 19, the European Parliament backed strong privacy protections for European citizens which GeneWatch 21

would require individuals to give their consent to the use of health data for research and which treats genetic data as requiring special protection.

Under the European Union’s complex decision-making process, member governments must now endorse the new proposals before they enter into law, or a process of amendments and negotiations must take place.

U.S. companies are vigorously lobbying to water down the safeguards so that health data and genomes from European citizens can be stored in the cloud and shared with commercial companies without people’s knowledge or consent. A new category of “pseudo-anonymized” data (with identifiers stripped off prior to widespread sharing, but retained in “safe havens” to allow linkage back to the individual and to further data sets) has been introduced to facilitate such sharing. However, until now the European Commission and Parliament have insisted that such data still retains sensitive personal information and should not be used for health research without the individual’s knowledge and consent.

The U.K. Government’s “care.data” scheme The U.K. Government has adopted legislation requiring all doctors to upload electronic medical records collected in the National Health Service in England to a central database called the Health and Social Care Information Centre. A system called “care.data” will then be used to share pseudo-anonymised health data with public and private bodies, and later to link in data collected by social services. There has been significant public controversy about the scheme, including concerns about potential access to such data by the police, its exploitation by 22 GeneWatch

commercial companies, and loss of patient privacy. It is clear that “pseudo-anonymisation” cannot protect identities from being deduced by a combination of other information and that promises of anonymity will certainly be meaningless if genotypes or whole genome sequences are later added to the records, as has been proposed. The plan is on hold now for six months while there is further policy debate.

The 100,000 Genomes Project Although genomes have not yet been included in the “care.data” scheme, the U.K. Health Secretary has made clear that it is his intention to screen the whole genome of every baby at birth and add this data to the system. Much of the impetus for this idea comes from the Google-funded gene testing company 23andMe, which has been in discussions with the U.K. Government about accessing this data since at least 2008.

The 100,000 Genomes Project has been set up as a pilot project for using whole genome sequences within the National Health Service. Its focus is on families with genetic disorders, who may genuinely benefit, and also on cancer research, rather than more speculative applications such as screening the whole genome of every healthy person. However, data collected in the 100,000 Genomes Project is expected to be widely shared with commercial companies for much broader purposes. It remains to be seen whether the data-sharing process will be sufficient to meet the proposed new European standards and also to maintain the public’s trust.

Security agencies, police access and transfers overseas A major factor in the debate in

Europe has been the revelations by Edward Snowden about the ease with which data stored in the cloud can be accessed by the U.S. National Security Agency. European politicians are increasingly aware that the whole genomes of individuals can be used to track then through their DNA (for example, by testing at borders using the new RapidDNA system) or identify who has been at a political meeting by collecting DNA from coffee cups. Because DNA can also be used to identify a person’s relatives, the potential for abuse is huge. Thus, debate continues about the extent to which genetic sequences should be stored on secure servers or made widely available via the cloud. Destruction of samples and data is a key part of protecting citizens from excessive state surveillance, but this important privacy protection conflicts with commercial claims that storing “Big Data”, including whole genomes from whole populations, is essential for progress in medicine.

These claims are hotly contested by many scientists, who point to evidence that genes are poor predictors of most diseases in most people, with limited clinical utility, and to limited success at predicting adverse drug reactions.

Gene test regulation A new EU In Vitro Diagnostics Regulation is being developed which will regulate software and algorithms used for health diagnoses or predictions, including genetic tests. Powers for prior pre-market assessment of genetic tests are weaker than those exercised by the U.S. Food and Drug Administration and it is expected that most oversight will remain with “notified bodies” which act as consultants to the companies making applications to sell tests on the EU Jan-April 2014

market. However, the new rules will require companies to provide evidence of clinical validity, and in some cases clinical utility, and this evidence will be made publicly available on request. The draft regulation also includes clauses which ban direct-toconsumer sales of genetic tests and make counseling mandatory. As with the draft EU Data Protection Regulation, the In Vitro Diagnostics Regulation still requires negotiation with the Council of EU Member States and is likely to be revised before becoming law. Strict regulation would restrict the market for genetic tests and other health-related algorithms to those that genuinely showed some benefit to health and prevent companies from making unsupported and misleading claims. Whilst some compromise is likely, it is clear that the current lack of any regulation for genetic tests with health-related claims is coming to an end.

Conclusions Data collected by public healthcare systems, particularly Britain’s National Health Service is seen as a gold mine by companies such as Google and the Google-funded gene testing company 23andMe. However, the British public are skeptical of commercial interests and are rightly concerned about the potential exploitation of this data for personalized marketing and its likely misuse to discriminate against them, for example by insurance companies. Further, government plans to store information that until now was private between an individual and their doctor has raised significant concerns about likely poor security and access by the police. Within the EU more widely, the Snowden revelations have raised awareness of the fact that information in the cloud will likely be Volume 27 Number 1

accessible to hackers including foreign governments. Restricting the use of whole genome sequencing to applications that are genuinely likely to be of benefit to health – such as diagnosing unknown genetic disorders in children who have symptoms – is more likely to maintain public trust than screening every baby at birth and making misleading claims about genetic susceptibility to common diseases or adverse drug reactions in the general population.

The coming months are likely to determine whether genuine safeguards are put in place to allow useful genomic applications to be introduced whilst maintaining public trust, or whether corporate greed and enthusiasm for building vast repositories of data without people’s knowledge or consent will lead to a major public backlash. nnn

From the Council for Responsible Genetics on the 30th Anniversary of GeneWatch magazine:

Helen Wallace, PhD, is the Director of GeneWatch UK. -Further reading: A DNA Database in the NHS: Your Freedom Up for Sale? GeneWatch UK Briefing. 23rd May 2013. http://www. genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/ DNAinNHS_GWbriefing_fin.pdf A DNA Database in the NHS? GeneWatch UK webpage. Contains regular updates on “care.data” and relevant legislation. http://www.genewatch.org/sub-569340

Biotechnology in Our Lives What Modern Genetics Can Tell You about Assisted Reproduction, Human Behavior, and Personalized Medicine, and Much More

Edited by Sheldon Krimsky and Jeremy Gruber For a quarter of a century, the Council for Responsible Genetics has provided a unique historical lens into the modern history, science, ethics, and politics of genetic technologies. Since 1983 the Council has had leading scientists, activists, science writers, and public health advocates researching and reporting on a broad spectrum of issues, including genetically engineered foods, biological weapons, genetic privacy and discrimination, reproductive technologies, and human cloning. Written for the nonscientist, Biotechnology in Our Lives examines how these issues affect us daily —whether we realize it or not.

AVAILABLE NOW from Skyhorse Press

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Very Big Brother The use of biometrics to verify identity – from DNA markers to retina scans – is quickly realizing the stuff of science fiction … including the potential for some downright dystopian side effects.

By Sunil Abraham

The Centre for Internet and Society, the organization I work for, currently serves on a committee established by the Government of India’s Department of Biotechnology, Ministry of Science and Technology in January 2013. The committee has been charged with preparing a report on the draft Human DNA Profiling Bill. Why should an organization that focuses on the Internet be invited to such a committee? There are some obvious reasons related to data protection and big data. CIS had previously served on the Justice AP Shah committee that was tasked by the Planning Commission to make recommendations on the draft Privacy Bill in 2012. There are also some less obvious connections, such 24 GeneWatch

as academic research into cyborgs wherein the distinction between human and machine/technology is blurred; where an insulin pump makes one realize that the Internet of Things could include the Internet of Body Parts. But for this note I will focus on biometrics – quantifiable data related to individual human characteristics – and their gate-keeping function on the Internet.

The bouquet of biometric options available to technologists is steadily expanding - fingerprint, palm print, face recognition, DNA, iris, retina, scent, typing rhythm, gait, and voice.

Biometrics could be used as authentication or identification to ensure security and privacy. However, biometrics are different from other

types of authentication and identification factors in three important ways that have implications for human rights in information societies and the Internet.

Firstly, biometrics allow for nonconsensual authentication and identification. Newer, more advanced and more expensive biometric technologies usually violate human rights more extensively and intensively than older, more rudimentary and inexpensive biometrics. For example, it is possible to remotely harvest iris information when a person is wide awake without even being aware that their identification or authentication factors have been compromised. It isn’t difficult to imagine ways to harvest someone’s fingerprints and palm Jan-April 2014

prints without their knowledge, and you cannot prevent a security camera from capturing your gait. You could use specialized software like Tor to surf the World Wide Web anonymously and cover your digital tracks, but it is much harder to leave no trail of DNA material in the real world.

Secondly, biometrics rely on probabilistic matching rather than discrete matching – unlike, for example, a password that you use on a social media platform. In the 2007 draft of India’s current Human DNA Profiling Bill, the preamble said “the Deoxyribose Nucleic Acid (DNA) analysis of body substances is a powerful technology that makes it possible to determine whether the source of origin of one body substance is identical to that of another, and further to establish the biological relationship, if any, between two individuals, living or dead, without any doubt.” This extract from the bill was quoted in an ongoing court case to use tampered chain of custody for DNA as the means to seek exoneration of the accused. And the scientists on the committee insist that the DNA Data Bank Manager “...shall communicate, for the purposes of the investigation or prosecution in a criminal offence, the following information to a court, tribunal, law enforcement agency ... as to whether the DNA profile received is already contained in the Volume 27 Number 1

Data Bank” – in other words, a “yes” or “no” answer. This is indeed odd for those who come from the world of Internet policy – especially when one DNA lab worker confidentially shared that after a DNA profile was generated the “standard operating procedure” included checking it against the DNA profile of the lab worker to ensure that there was no contamination during the process of generating the profile. This would not be necessary for older forms of biometrics such as the process of developing a photograph. In other words, chain of custody issues with every generation of biometric technology are getting more and more complex. In the developing world, the disillusioned want to believe that “technology is the solution.” The fallibility of technology must determine its evidentiary status.

Finally, biometrics are only machine-scrutable. This means machines and not human beings will determine whether you are guilty or innocent; whether you should get subsidized medicine, grain, or fuel; whether you can connect to the Internet via mobile phone, cybercafe or broadband. DNA evidence is not directly observable by judges and therefore the technology and equipment have to be made increasingly transparent so that ordinary citizens as well as the scientific community

can audit their effectiveness. In 2009, the Second District Court of Appeal and Circuit Court in Florida upheld a 2005 ruling requiring CMI Inc, the manufacturer of Intoxilyzer 5000, to release source code, failing which evidence from the breathalyzer would be rendered inadmissible in more than 100 drunk driving cases. If the transparency of machines is important when prosecuting misdemeanors then surely this is something we must advocate for when culpability for serious crimes is determined through DNA evidence and other types of biometric technologies. This could be accomplished by the triad of mandates for free/open source software, open standards and open hardware. This is not necessary for all DNA technology and equipment that is used in the market, but only for a small sub-set of these technologies that impinge on our rights as human beings via law enforcement and the judicial system.

It has been nine years since India started the process of drafting this bill. We hope that the delays will only result in a robust law that upholds human rights, justice and scientific progress. nnn Sunil Abraham is Executive Director of the Centre for Internet and Society, based in Bangalore, India.

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Baby DNA Warehousing Newborn screening saves lives – but should governments be saving newborns’ DNA without parental consent?

By Twila Brase

While there is little disagreement over the value of newborn screening, what happens after the screening is causing a contentious debate nationwide.

At issue is whether state government officials are permitted to automatically keep the DNA and genetic test results of every newborn or whether parents must be asked before the child’s genetic information is stored, used, and shared for analysis, research and other state government purposes.

Most parents do not know that newborn screening is genetic testing. But as Dr. Jeffrey Botkin at the University of Utah’s Department of Pediatrics and Medical Ethics has said, newborn screening is the “largest single application of genetic testing in medicine.”

In the past, newborn blood and test results were destroyed after the testing was done and the results were reported. But increasingly, state health departments have started storing, using and sharing the child’s genetic information for research and analysis – without parental consent.

Therein lies the rub.

Our efforts to protect the genetic privacy rights of all babies began in Minnesota. In 2003, we launched a proposal to repeal the requirement that state legislators determine the conditions tested for which every child is tested through newborn

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screening. Instead, the Department of Health proposed to give that discretion solely to the Commissioner of Health, allowing the commissioner to expand screening ad infinitum without parental consent.

After we testified that newborn screening is a government genetic testing program over which parents have no control, legislators enacted a dissent (opt-out) option for the screening. We preferred affirmative consent (opt-in), but this provides some protection as the federal government moves toward full genomic sequencing for newborn screening.

During our negotiations with the Department, we were surprised to learn that the newborn screening genetic test results and the collected bloodspots were being stored.

The retention, starting in July 1986 for the test results and in July 1997 for the bloodspots, was being done without parental knowledge, parental consent or legislative authority.

Legislators compromised with the Department, allowing parents to request that their child’s DNA and genetic test results be destroyed – but the law did not mandate that parents be told they had that right. And most were never informed.

The opt-out provision allowed the entire storage and use program to continue outside of parental awareness. To highlight the Department’s secret stash of newborn bloodspots,

we dubbed the issue “Baby DNA Warehousing.”

In 2007, an administrative law judge found the Department’s storage, use and sharing in direct violation of the Minnesota Genetic Privacy Act of 2006. Health officials refused to budge, instead withdrawing the proposed rules. For the next three years, health officials continued to store and use newborn genetic information as the Department tried unsuccessfully to exempt newborn screening from the state’s genetic privacy law. On March 11, 2009, nine parents brought together by our organization sued the State of Minnesota.

Meanwhile, our organization’s efforts had attracted the attention of a Texas news reporter who subsequently discovered Texas was also storing newborn DNA. After she reported the infringement, a Texas mother filed a lawsuit on March 12, 2009.

In both cases, the courts ruled in favor of the parents. In Texas approximately 5.2 million stored blood spot cards were destroyed by court order.

In Minnesota, the lawsuit went to the Minnesota Supreme Court. At every juncture, state health officials argued that the child’s newborn screening results and bloodspots were not genetic information. On November 16, 2011, the Court disagreed. In January 2014, as part of the settlement

Jan-April 2014

agreement, approximately 1.2 million stored blood spot cards were destroyed.

Unfortunately, the Minnesota Genetic Privacy Act has a loophole. The law does not govern genetic information governed by another state law.

In 2012, the newborn screening law was amended to require parent consent for storage, use and dissemination of genetic information. Thus the privacy act and its penalties no longer protect genetic information acquired through newborn screening.

In 2013, the legislature specifically exempted newborn screening from

Volume 27 Number 1

the genetic privacy law. This year, the Department has returned with legislation to repeal the parental consent requirements added in 2012. In addition, the bill makes Baby DNA storage indefinite – forever – and removes parental consent requirements for genetic research.

Despite one’s genetic code being the most private of private property, newborn bloodspots have been called a “national treasure.” As noted in a 2010 article published by the American Bar Association, “Scientists realized that the NBS samples contained a wealth of

genetic information on just about every baby born in the United States. States began storing the NBS samples for research and, in some cases, even sent samples to biobanks. In 2003 and 2007, the US military received 800 NBS samples from the Texas Department of State Health Services in order to ‘help develop a mitochondrial DNA database for use by law enforcement.’ In Michigan, millions of NBS samples in a state warehouse were used to create a ‘neonatal biobank’ in Detroit in the hopes of making

GeneWatch 27

the city a center for biomedical research. The Minnesota Department of Health also collected newborn blood samples and kept them indefinitely, sharing them not only with hospitals, but private research institutions – all without parental consent.”

Oklahoma, looking at the lawsuits taking place in Texas, took definitive action to protect genetic privacy. Oklahoma Senate Bill 1250 was signed into law on May 10, 2010, prohibiting the “unauthorized storage, transferring, use, or databasing of DNA from any newborn child without express parental consent.”

Texas, despite two lawsuits on the issue, still allows the newborn’s DNA to be stored for two years and used for genetic research (test development) during that time. Meanwhile, Michigan stores the newborn’s DNA without consent but allows parental dissent for storage and requires parental consent for research using the stored bloodspots.

Government storage and use of newborn DNA remains essentially a state secret. The public does not know. At last count, 18 states keep newborn DNA samples 10 years to indefinitely. In 2009, the federal government awarded a contract to the American College of Medical Genetics to develop a National Newborn Screening Translational Research Network to, among other things, create a physical or virtual repository of newborn DNA “stored by state newborn screening programs and other resources.” Currently four states participate in a virtual repository, or as the URL notes, a “tissuelocator”: California, Iowa, Michigan and New York.

In addition, PEDIATRICS reports 28 GeneWatch

that 18 states have not addressed the retention and use of newborn DNA. Four states claim the child’s DNA as state government property. Only three states require parents to be told they can opt-out of the DNA storage and use program, and only five states actually let parents request the destruction of the stored bloodspots.

In a paper called “Not Without My Permission,” Dr. Beth Tarini reported significant parental reluctance to participate in research if consent was not obtained. In fact, only 28.2 percent of parents were “very or somewhat willing” to have their child’s DNA used for research without their permission. Another Michigan study found that citizens “affirmed the principle of voluntary informed participation in research.”

Katherine Drabiak-Syed of the Indiana University Center for Bioethics argues that “informed consent should be required for both storage and research following the screening process, and parents should retain the right to refuse their infant’s participation in the state’s biobank despite the potentially great social benefit derived from the sample.” She notes that retention and research are “human subjects research” but that the federal government has not classified it as such, leaving children and their parents vulnerable to various violations.

Disregarding individual rights poses a serious danger to newborns.

As the ACLU notes in a May 14, 2010 letter chastising the national newborn screening committee’s decision to not support consent requirements for storage and use of newborn DNA:

used against their will and beyond their control for other unspecified purposes, there is a real risk that the public will lose trust in the newborn screening program. The program saves lives.

It would truly be tragic if the expanding use of newborn blood for unconsented-to research were to result in parents declining to have their infants screened in the first instance. Public sentiment that samples are being misused, or that individuals are being misled or not given a say in their use could lead to a political backlash undermining the support upon which those very research projects ultimately depend.”

Parents know instinctively that their child’s DNA is not government property. They worry about how the genetic information could be used against their child. State and federal laws should recognize the individual’s privacy and property rights over their own genetic information. All opt-out (dissent) provisions should be eliminated in favor of affirmative written informed parental consent requirements.

Anything less threatens the public’s trust and fails to acknowledge the essential rights of individuals. nnn Twila Brase is President and Cofounder of Citizens’ Council for Health Freedom.

“As individuals increasingly feel that their babies’ blood is being taken for one purpose and then Jan-April 2014

Student Essay

I Still Want to Know A college student writes a paper about GMO labeling – and learns much more than she bargained for.

GeneWatch accepts essay submissions from students of any age!

Please email anderson@gene-watch.org

By Juanita Rios I am 24 years old and sadly, I have only known about GMOs for about two years. My interest in the matter grew quite passionate after the Farmers Assurance Provision bill had passed, and the opportunity to express my feelings about GMOs presented itself in my English class when my professor assigned a research paper. I chose to write on the topic of the mandatory labeling of GMOs, especially since the rejection of California’s Proposition 37, which would have required companies to label foods containing GMO ingredients.

I titled my research paper “I Want to Know What I am Eating.” As I was doing my research, I came across an article that led me to Samuel Anderson, editor of GeneWatch. Mr. Anderson graciously granted me an interview, and afterward, asked me if I was interested in writing an article about what I learned and whether my views on GMOs and the labeling of GMOs have changed due to my research. I can honestly say, now that I have become more educated on the issue, I still want to know what I am eating, and the only way to accomplish this is through food labeling.

I learned that the purpose of GMOs is to obtain desired traits and to make the crop stronger against certain weather conditions, pesticides, diseases, and improve quality. Many people believe genetically engineered breeding is the same as traditional crossbreeding, but that is a misconception. Traditional crossbreeding occurs between organisms that are sexually compatible, whereas Volume 27 Number 1

genetically engineered breeding can mix the DNA of species as unrelated as a flounder and a tomato.

I was intrigued by the regulations for GM crops – poor regulations.

The FDA relies on the studies made by the developer to decide if the GM crop is safe. In other words, the FDA is not responsible for the risks, the companies are. It is hard not to wonder whether this is related to the “revolving door” between the companies that develop GM crops and the government agencies which regulate them. For example, Michael R. Taylor is the deputy commissioner for foods at the FDA. Another important position Michael R. Taylor used to hold was Vice President for Public Policy at Monsanto. How can Taylor reassure consumers there is nothing to worry about if he has an affiliation with Monsanto? He has an obvious conflict of interest – much like when scientists who have been hired by biotech companies tell consumers GMO foods are just as healthy to eat as non-GMO foods are.

In the meantime, independent research and findings made by other scientists, who are not hired nor have an association with these biotech companies, are ignored. Independent research is restricted due to the patent-based rights, so when companies such as Monsanto do grant authority for independent research, it is under their rules and it is ultimately up to the company whether or not the findings will be published.

I believe industry studies are not enough simply because there will be

biases and surely the developers are not going to reveal the cons, only the pros. The studies made by the industries are not published and cannot be reviewed. Some scientists reassure consumers there are no health risks, but other scientists disagree. Who do we believe? Many countries have banned or at least have labeled foods containing GMOs, such as Australia, Japan, and the European Union, to name a few. Other parts of the world refuse to eat foods that have been genetically engineered – does that not raise concern? Consumers are not asking for the complete elimination of GMOs and are not even requesting for the regulations to change (as we should); all we are asking for is a label.

Labeling not only informs consumers, it gives them a choice as well.

Yes, consumers can inform themselves and purchase products that are labeled “non-GMO” and shop organic, but is that fair if 70-80% of foods sold in grocery stores contain GMO ingredients? I spent 6 weeks doing research and accumulating data and I came to the conclusion that I still want to know what I am eating and the best and most convenient way is by the mandatory labeling of foods containing GMOs. After all, it’s about what the consumer wants, right? nnn Juanita Rios is a student at Riverside Community College in Riverside, California.

GeneWatch 29

Launch of the California Genetic Privacy Network Information, Guidance, and Training on California Genetic Privacy Protections Consumers today are faced with almost daily risks to their genetic privacy. A tsunami of personal genetic data is being created as genetic testing increasingly becomes an integral part of medical research and health care. The vast amount of genetic data being generated raises serious medical privacy concerns. Many Californians are afraid that their genetic information will be used against them and are unwilling to participate in medical research or to be tested clinically, even when they are at substantial risk for serious disease. The public simply does not trust insurers, employers and other entities with incentives to improperly acquire and use genetic information.

Despite the passage of several new laws to protect genetic privacy, many remain unaware of their privacy rights, of where they are protected and where they aren’t. It’s not difficult to ascertain why: there has never been a comprehensive public education program on genetic privacy.

That is why the Council for Responsible Genetics and the Alliance for Human Biotechnology are pleased to announce the creation of the California Genetic Privacy Network; an ongoing project to educate Californians and the greater public about genetic privacy rights.

The Network’s website will serve as a resource for Californian patients, consumers and other front line actors to have an informed understanding of their genetic privacy rights under California and federal law. The California Genetic Privacy Network also offers in person and online educational consultations.

Endnotes Patricia Williams, p. 4 1. http://philosophicalcomment. blogspot.se/2013/09/why-southernswedens-police-should.html 2. http://www.youtube.com/ watch?v=jf3MrVHkKxk 3. “Microsoft Software Leak Inquiry Raises Privacy Issues.” New York Times, March 20, 2014. http://www. nytimes.com/2014/03/21/technology/microsofts-software-leak-caseraises-privacy-issues.html?_r=0 4. Grewal, David Singh and Jedediah Purdy. “Introduction: Law and Neoliberalism.” http://scholarship.law. duke.edu/cgi/viewcontent.cgi?article =5852&context=faculty_scholarship Jeremy Gruber, p. 10 1. See FBI, CODIS-NDIS Statistics, http://www.fbi.gov/about-us/lab/ biometric-analysis/codis/ndis-statistics (last visited March 12, 2014).

2. S. & Marper v United Kingdom, App. No. 30562/04, paras/ 75, 76 (Eur. Ct. H.R. Dec. 4, 2008).

3. http://www.fbi.gov/about-us/ lab/codis/qas_databaselabs (last visited March 12, 2014).

4. See DNA Technology in Forensic Science, Comm. On DNA Tech. in Forensic Sci. of the Nat’l Acad.

Of Sci. 122 (1992) and Privacy and Progress in Whole Genome Sequencing, Pres. Comm’n for the study of Bioethical Issues (Oct. 2012).

5. Id.

Check out the California Genetic Privacy Network website today at:

www.geneticprivacynetwork.org

30 GeneWatch

Jan-April 2014

GEnEtic ExplanationS Sense and Nonsense

Edited by ShEldon KrimSKy and JErEmy GrubEr Can genes determine which fifty-year-old will succumb to Alzheimer’s, which citizen will turn out on voting day, and which child will be marked for a life of crime? Yes, according to the Internet, a few scientific studies, and some in the biotechnology industry who should know better. Sheldon Krimsky and Jeremy Gruber gather a team of genetic experts to argue that treating genes as the holy grail of our physical being is a patently unscientific endeavor. Genetic Explanations urges us to replace our faith in genetic determinism with scientific knowledge about how DNA actually contributes to human development.

The concept of the gene has been steadily revised since Watson and Crick discovered the structure of the DNA molecule in 1953. No longer viewed by scientists as the cell’s fixed set of master molecules, genes and DNA are seen as a dynamic script that is ad-libbed at each stage of development.

Rather than an autonomous predictor of disease, the DNA we inherit interacts continuously with the environment and functions differently as we age. What our parents hand down to us is just the beginning. Emphasizing relatively new understandings of genetic plasticity and epigenetic inheritance, the authors put into a broad developmental context the role genes are known to play in disease, behavior, evolution, and cognition.

Rather than dismissing genetic reductionism out of hand, Krimsky and Gruber ask why it persists despite opposing scientific evidence, how it influences attitudes about human behavior, and how it figures in the politics of research funding.

Sheldon Krimsky is Professor of Urban & Environmental Policy & Planning in the School of Arts and Sciences and Adjunct Professor of Public Health and Community Medicine in the School of Medicine at Tufts University.

Jeremy Gruber is President and Executive Director of the Council for Responsible Genetics.

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