Genomics, Big Data and Google

Google is offering cloud storage and genomic specific services for genome data bases.  It is unclear (to this blogger) what levels of anonymity can be assured with such data.  Presumably a full sequencing (perhaps 100 GB of data) is unique to a given person (or set of identical twins since this does not, yet, include epigenetic data) providing a specific personal identifier — even if it lacks name or social security number. Researchers can share data sets with team members, colleagues or the public.  The National Cancer Institute has moved thousands of patient datasets to both Google and Amazon cloud storage.

So here are some difficult questions:

If the police have a DNA sample from a “perp”, and search the public genome records, and find a match, or parent, or … how does this relate to U.S. (or other jurisdiction) legal rights?  Can Google (or the researcher) be forced to identify the related individual?

Who “owns” your DNA dataset? The lab that analyses it,  the researcher, you?  And what can these various interests do with that data?  In the U.S. there are laws that prohibit discrimination for health insurance based on this data, but not long term care insurance, life insurance or employment decisions.

Presumably for a cost of $1000 or so I can have any DNA sample sequenced.  Off of a glass from a restaurant, or some other source that was “left behind”.  Now what rights, limits, etc. are implicit in this collection and the resulting dataset?  Did you leave a coffee cup at that last staff meeting?

The technology is running well ahead of our understanding of the implications here — it will be interesting.

Privacy Matters

Alessandro Acquisti’s TED talk, Why Privacy Matters.lays out some key privacy issues and revealing research of what is possible with online data  In one project they were able to locate student identities via face recognition in the few minutes needed to fill out a survey …. and potentially locate their Facebook page using that search.  In a second project they were able to deduce persons social security numbers (a key U.S. personal identifier) from their Facebook page data. This opens the possibility that any image of you can lead to both identifying you, and also locating significant private information about you.

There is a parallel discussion sponsored by the IEEE Standards Association on “The Right to be Forgotten“.  This was triggered by a recent European court case where an individual did not want information about his past to be discoverable via search engines. These two concepts collide when an individual seeking to be “forgotten” has their image captured by any range of sources (store cameras, friends posting photos, even just being “in the picture” that someone else is taking.)  If that can be translated into diverse personal information, then even the efforts of the search engine providers to block the searches will be futile.

Alessandro identifies some tools that can help:  The Electronic  Freedom Foundation’s anonymous internet portal, and Pretty Good Privacy (PGP) which can deliver a level of encryption that is very expensive to crack, with variations being adopted by Google, Yahoo and maybe even Apple to protect the content of their devices and email exchanges. There are issues with the PGP model and perhaps some better approaches. There  is also government push back against too strong of encryption — which is perhaps one of the best endorsements for the capability of such systems.

Behind all this is the real question of how seriously we choose to protect our privacy. It is a concept given greater consideration in Europe than in the U.S. — perhaps because the deeper European history has proven that abuse by governments or other entities can be horrific — an experience that has not engaged the “Youth of America”, nor discouraged the advertising/commercial driven culture that dominates the Internet.

Alessandro observes that an informed public that understands the potential issues is a critical step towards developing policy, tools and the discipline needed to climb back up this slippery slope.

 

Phony Cell Towers (who, why, …)

Popular Science Magazine had an article on “Who is running the phony cell phone towers” along with a map of some 20 plus that had been located.  These “towers” look like a local service tower to all cell phones in range and can capture some “meta data” (phone #, ID, location info) without any need to decrypt actual calls, but could also do that with some additional effort.

Variations of this technology, “Stingray” and “Triggerfish” are available for sale, perhaps with some limitations on buyers — at least for major manufactures like Harris.   How these are being used in the U.S. is being carefully protected according to a 2011 Wall Street Journal article. Popular Science indicates that a unit could be constructed for as little as $2000 by a knowledgeable hacker (at a maker-space near you no doubt), but did not point to any kits, plans or software available on the net at this time.

While the question posed by Popular Science and some other publications related to this recent survey of phony towers is “who is doing it?” — a more relevant observation is that any entity with resources and interest can do so in any country.  It is probably illegal in most if not all countries, at least for non-governmental agencies, but with a low cost, low profile and difficult to detect characteristics you can bet it is being done.  There are phones that can detect, and reject these tower connections, which is what the really bad guys might use (or disposable phones that they trash after every use which might be cheaper.)

While the “NSA” data collection revelations have sparked a lot of interest, and apparent “surprise” from foreign country officials — this potentially more “democratic” capability (everyone can do it) has not gotten the same press.  Of course the opportunity for abuse is much greater with a comprehensive program managed by government entities, but the opportunity is there for unscrupulous actors to monitor our cellular presence (note just having your phone “on” provides for this tracking, no calls required.)

Technology has addressed the “how, what, when and where” issues, the “who and why” answers will vary from country to country and perhaps a new form of paparazzi as well.

Private Cameras vs State Cameras

A recent opinion piece in Technology and Society by Jay Stanley (ACLU) questions the impact of Omnipresent Cameras — every cell phone is a video device, potentially streaming to the net live. Drones, private and government have their eyes open. Streets are monitored at traffic lights (and elsewhere) by government cameras as are many buildings via private cameras. The next article by Steve Mann talks about the “black bubbles” that are used to obscure cameras — and includes delightful images of Steve and friends with similar bubbles on their heads.  Steve points to lighting devices that incorporate cameras that can recognize faces and read license plates Jay points out that today we expect significant events in the public space to be recorded. The aftermath of the Ferguson shooting was captured by a cell phone camera, but the police car recordings (if any) have not been released.

All of this leads to  cultural questions  on the appropriate expectations of privacy, possible restrictions on public recording of government activities (such as police at a traffic stop, or the evolution of a demonstration in the streets of (pick your favorite city). It does not take much to demonstrate that eye witnesses are poor recorders of events (see Dan Simmons research on selective attention) — this makes the availability of “recorded” evidence quite useful. With more cameras on cars (backup cameras), on person (Glass), on buildings, on planes/drones, light-bulbs, and yes-the increasing image quality of the cameras that turn on/off devices in the bathroom (Steve points out these are up to  1024 pixels) the expectations of privacy “in public” are diminishing, and the potential for photographic evidence are increasing. Jay suggests that both police and the folks they interact with act differently when officers are equipped with body cameras.

So is this good?  What ethical issues, or even rules of evidence apply? How does it vary from culture to culture?

Prenatal Genomics

A genomics researcher, Razib Khan, sequenced his child’s genes prior to birth, a first for the U.S. with a “normal” child.  This is described, with some of the legal and other issues in an article in MIT’s Technology Review. Khan comments on the issue of “who owns a genome” in this article and part of a regular Blog he posts. Just to be clear, this is the 6 billion base pair analysis, not the half billion 23andMe form, so he now has most of the story.  I don’t think full Genome analysis addresses epigenetic information such as methyl groups and histone variations. These can affect gene expression, and also reflect a path for passing information from generation to generation without mutation and as a result of the activities of the parent.  So, yes, it appears your smoking, drinking, etc. can affect your children and grandchildren — actually one of the evident connections is between famine and longevity of grandchildren.

The FDA is currently blocking 23andMe from providing health analysis related to their genomic testing, but for clients, the results are available in raw form, and online sites allow cross checking. Of course in the world of the Internet, most attempts to control information are futile.  A software package Promethease provides analysis via a literature search “for free”.  Of course one might worry about what the creators of that package do with the information besides telling you about the genome you submit (presumably your own).  It seems that the FDA, while trying to protect consumers from “medical advice not provided by a professional”, have pushed the  liability and challenges associated with this from a contractually obligated partner to the open internet.

Looking forward, we can anticipate that genome sequencing will be available to the public, at least in “free” countries, and that analysis will be possible with varying degrees of quality control in such environments.  It would seem the medical, policy, and ethical community might be better served by focusing on articulating the issues and educating the public rather than trying to get the genie back in the bottle (or should I say the Genome back in the bottle.)

Culture vs Technology

Freedom of Speech vs the Right to be Forgotten …. Technology and Society, but whose society?  A recent European Court ruled that Google (also Bing, Yahoo, etc.) might be required to remove links that might be “accurate” but objectionable to the affected individual(s).  It is easy in a world with a dominating culture (U.S.A.) and particularly for technologists working in that culture (Google, et al) to adopt and apply the values of that culture (Free speech) without being aware of alternative cultural norms.

Apparently in Europe, particularly in Germany and France, have some precedents that suggest that prior offences, actions, public knowledge should become unaccessible in the present and future.  This is being considered as part of new E.U. Privacy legislation, and not just a court finding.

It is easy (particularly for those of us in the USA) to hold up the sacred right of free speech (as written in the book of Constitution, verse 1:1) and ignore the concerns, and abuses associated with this.  Some folks on-line are surprised that Facebook (or other) postings of their pictures/activities may result in them being expelled from college, fired, or fail to get a job. This “long tail” left by all of us in the exponentially growing web may contain many issues of concern.  For example, if I mention diabetes in this posting might I lose health insurance? Or if someone with a very similar name is leading a quite different life style, might I suffer some of the consequences?  And of course if I advocate an issue or candidate or religious affiliation could I find that I am persecuted in the media, or worse by police showing up  at my door (consider the recent transitions in Egypt… ops, there I go).

Consider one example, the widespread “sex offender” registration required by many US states.  This has  been a topic of non-academic discussion (Dear Abby) recently but presents an interesting reference. Note that the distinction between an individual found guilty of molesting children many times and a eighteen year old’s indiscretions with a seventeen year old can be indistinguishable in this context.  The public “right to know” would seem to apply in one case, and the chances of recurrence seems unlikely in the other —  yet both may lead to loss of job opportunities, shunning by neighbors, etc.

Facilitating the oppression of religious groups, political dissidents, or even un-informed misuse of the failings of youth seems a good rationale for a “Right to be Forgotten”.  At the same time,  and almost in the same breath, we can hear the need to know a political candidate’s racist remarks, the series of lawsuits brought against a used car dealer (the U.S. stereotype for a shady business),  or perhaps that my fiance has three divorces in the last five years. (This is hypothetical!)  The “Right to be Forgotten” may also be countered with the “Right to Never Be Forgotten”.  The Internet has created a global village — with all of the gossip and “everyone knows” implications of the spotlight of a small town.

This challenge is just beginning.  With face recognition and public web-cams, and many other sources of personal data being captured explicitly or implicitly how we deal with the diversity of cultural norms is non-trivial.

What are the issues you see?

T&S Magazine, Winter 2013

T&S Magazine

VOLUME 21, NUMBER 4, WINTER 2013

TS-Winter

 

DEPARTMENTS


4 EDITORIAL For Now We See Through a Glass, Darkly Katina Michael


6 BOOK REVIEW Digital Whoness: Identity, Privacy and Freedom in the Cyberworld


8 LETTERS TO THE EDITOR


9 LEADING EDGE Automatic Quality Management in Crowdsourcing Daniel Schall


14 LEADING EDGE Transparancy-Driven Business Process Management in Healthcare Settings Mathias Kirchmer, Sigifredo Laengle, and Victor Masías


17 OPINION The Future of Outdoor Media Systems Ron Harwood


19 OPINION Promoting Psychological Wellbeing: Loftier Goals for New Technologies Rafael A. Calvo and Dorian Peters

22 OPINION Open Prosperity: Breaking Down Financial and Educational Barriers to Creating Physical Goods Stephen Fox


 25 COMMENTARY Understanding the Human Machine* Deborah Lupton


    SPECIAL SECTION ON SENSORS Katherine Albrecht and Katina Michael


31 GUEST EDITORIAL Connected: To Everyone and Everything Katherine Albrecht and Katina Michael  


SPECIAL SECTION FEATURES   35 Asynchronous Adaptations to Complex Social Interactions* Sally Applin and Michael Fischer


45 Comparing British and Japanese Perceptions of a Wearable Ubiquitous Monitoring Device* Stuart Moran, Toyoaki Nishida, and Keiichi Nakata


50 Public Open Sensor Data: Revolutionizing Smart Cities* Albert Domingo, Boris Bellalta, Manuel Palacin, Miquel Oliver, and Esteve Almirall


57 Public Domain Treaty Compliance Verification in the Digital Age* Christopher W. Stubbs and Sidney D. Drell


 

*Refereed articles Cover Image: Fabio Lima.