The Role and Impact of Open Data in the Fight Against HIV/AIDS

Today is World AIDS Day.

December 1st has long been an important date on my calendar. I try to take some time out every year to give my attention to understanding the state of progress toward defeating the scourge of HIV/AIDS.

During my graduate program, one of my first semester-long internships was dedicated to assisting a project team to digitize and make available the Jon Cohen AIDS Research Collection. Cohen's groundbreaking book Shots in the Dark: The Wayward Search for an AIDS Vaccine was one of the first comprehensive reports on the emergence of the virus and the scientific struggles to combat it. Cohen donated all of his papers to the University of Michigan for archiving and sharing.

Specifically, I conducted usability tests with targeted researchers of the collection to ensure that the University of Michigan's DLXS platform would work well for navigating the collection. Being close to that collection and taking some time out to read Shots in the Dark opened my eyes and set me on a path to joining organizations like ONE and DATA and contributing to the Global Fund.

I'm taking some time out here at [dys+-(u)topia] to just draw some quick attention to the role and impact of historic open data resources like Cohen's Archive as well as the great work of organizations like ONE and their annual DATA reports, and particularly their extensively published open methodologies (see page 77) and use of open governmental data sets. Through their work governments, NGOs, and activists get a sobering real-time picture of the ongoing challenges countries are experiencing to stay on top of the spread of HIV/AIDS. We need this data and research (and the funding to produce and support it) to organize policy and resources.

Getting down to the science of all this--it was announced just yesterday that another set of incredible open data from the Los Alamos National Laboratory is now laying the basis for one of the first efficacy studies for an investigational HIV-1 preventive "mosaic" vaccine. The study--named "Imbokodo," the Zulu word for "rock" from a South African saying referring to the strength of women and their importance in the community--could lead to the development of a vaccine that can address the fuller range of diverse strains of the virus.

As the Lab's press release explains:

The HIV database holds sequences gathered from scientists all over the world; it currently houses over 800,000 HIV sequences. Mosaic vaccines are computationally designed from protein sequence data that were extracted from this wealth of sequences, and the computer code used to design them was inspired by the way HIV-1 itself naturally evolves. The problem the mosaic code sets out to solve is to design just a couple of sequences that in combination will best capture the global diversity of the virus.

HIV/AIDS remains one of the most destabilizing epidemics in the developing world, and continues to persist and raise public health concerns even in more developed countries. We need support and resources for open data to stay on top of HIV/AIDS and ultimately defeat it.

I hope you will join me today in both taking some time out to consider the ongoing suffering on a human level that HIV/AIDS continues to exact, but also reflect on the nitty-gritty work taking place with data and science that is forging ahead to help shift the balance.

Enlarging Our Data Crusade to Include the Displaced - Post 2

In my previous post, I touched briefly on some of the concerns surrounding the collection and use of biometric data on refugees.

If it needed to be stated more clearly after reading that post, I want to be sure to stress that I do see the value and importance of any country having a system for registering the entrance and exit of displaced peoples within their borders. I can also understand the urgency surrounding the EU's recent consultation on establishing an interoperability mechanism for the various member country databases. There are legitimate security concerns when it comes to tracking and managing the flow of non-citizens within a country.

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Rather, to recap the emphasis I wanted to convey in that previous post, I think the prevailing concerns around the collection and storage of biometric data from refugees is the special vulnerability that these people face when it comes to any misuse of their data or exposure to what privacy experts refer to as "function creep"--in this case use of the data beyond the original intention of its collection.

So, for example, when an UNHCR field station within one country collects fingerprints, facial or iris scans, or DNA from a refugee for the purposes of managing their aid and asylum process, and that data then subsequently gets accessed by legal agencies from another country with intentions for pursuing extradition or demanding refoulement. That refugee would almost definitely have no legal citizenship rights to fall back upon in the courts or justice systems.

In my previous post, I also left off by saying that I wanted to make an effort in this next post to point readers to some good published literature examining the use of biometrics in the refugee situation and then suggest some ways that readers can begin to advocate on behalf of these most vulnerable.

Three great publications that I can recommend for getting up to speed with the use of biometrics in a humanitarian context are:

I have a lot of confidence that after you have spent some time with each of those articles you will feel a little better equipped with both a sense of the implications of the use of these technologies on those with no legal status, as well as an acute sense of urgency around the need for our respective governments to hear from each of us who do have some capacity to shape our respective national policies with respect to refugees.

I would also encourage readers to spend time with the references and bibliographies for each of these articles and take your interest and research deeper.

When it comes to taking action I can recommend at least two immediate steps that a reader can take. First of all, tap into the NGOs that are marshaling their resources towards defending refugees, asylum seekers, and the displaced. Join their campaigns. Donate.

Here in the U.S. we of course have the ACLU. But looking beyond our borders to the bigger global picture are Amnesty International, Human Rights Watch, and Refugees International.

But more specific to the issue of biometrics, I would urge readers to start following the work and actions of Privacy International. They are doing some incredible advocacy on behalf of refugees and protection for their data.

For example, as the EU is seeking to make country databases of refugee biometric data more interoperable and shareable with legal agencies across borders, Privacy International, in a recent comment for the related public consultation, drew attention to the EU's flagrant oversight and disregard for data protections in the proposal.

Sadly, it appears that governments are approaching the use of technologies in this milieu strictly as a means for greater security and control as opposed to balancing its use against civil rights and constitutional protections. Which underscores the need for all of us as citizens to make our voices of concern heard. We must work through NGOs and their political lobbies, as well as make contact with our immediate representatives and those from other constituencies serving on key committees that drive the formation of legislation and policy in these areas.

Here in the U.S. we have recently heard some incredibly bolstering statements from Senator Al Franken, Ranking Member on the Sub-Committee of the Judiciary on Privacy, Technology, and the Law, about the overreach of influence and control that big tech (Amazon, Facebook, Google, Apple, etc.) has over both our individual data and the data that influences our society, politics, and culture. We should encourage our politicians in these statements (not disregarding their missteps or crimes - Franken is cooperating with an inquiry into allegations of sexual abuse).

Specifically, in the coming days, I will be voicing my deep concerns about the Trump administration's efforts to dismantle the Bureau of Population, Refugees and Migration, the agency within the State Department responsible for handling aid and diplomacy in the world's displacement zones.

Part of what I hope these blog posts can do, in small ways, is add to the echo of accountability and positive reform. So by all means, please feel free to share!

Enlarging Our Data Crusade to Include the Displaced - Post 1

This past weekend I took in a showing of Ai Weiwei's newest documentary Human Flow.

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For someone like myself who does not subscribe to cable news and who has consequently followed the refugee crisis in drips and drabs through mostly static online news articles and social media, Human Flow was my first comprehensive window into this global nightmare.

Ai Weiwei did a remarkable job of capturing both the scale and the humanity of the displacement, without descending too grossly into the sensationalism of the chaos and conflict that permeates each of the unique situations unfolding across the global map--Syria, Iraq, Afghanistan, Gaza, Kenya, Myanmar, etc., etc., etc..

It is a moving and meditative documentary and I highly recommend folks give it a viewing.

Going into the film I actually came armed with a bit of specific curiosity. Given Ai Weiwei's previous digital activism, I wondered if he might touch on the increased usage of biometrics and tracking databases for in-country and cross border refugee processing. There were minor clips here and there but it certainly was not the focus of the documentary. Which is all fine and good, but for for what it is worth, the United Nations High Commission on Refugees (UNHCR), and of course the host country governments in which they are allowed to operate, work both separately and together to gather biometric data (fingerprints, iris scans, and even DNA) on refugees upon their arrival, entry and ongoing transfer.

On the whole, the collection of this highly personal information is in the interests of the refugees themselves, as it becomes the primary mechanism for them to receive aid and in some cases for them to successfully navigate the country systems toward settlement, re-settlement and perhaps even new citizenship. In Jordan, for example, Syrian refugees can have their irises scanned at ATMs and banks to receive cash assistance.

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The digital dilemma at the center of this use of data is the fact that neither the UNHCR nor the host countries have issued any public policy directives regarding the longer term security and ethical use of this highly personal information. All publicly stated assurances, internal contracts and service agreements aside, there are "seemingly" no stated limits or boundaries on how this data can or should be shared--for example with in-country law enforcement, the military, security services or even with their counterparts in other countries with whom they may be partnering. This raises all sorts of questions around fair protections for the millions of stateless children, women and men being subjected to these systems.

In her article "Tracking Refugees With Biometrics: More Questions than Answers," Sarah Soliman, a former Special Forces contract support specialist in Afghanistan tasked with leading the first Identity Operations team to deploy biometrics in that arena of combat framed the lingering questions this way:

One challenge posed by the United Nations advancement of biometrics: How long before registration information is used in a court of law? Enrollment devices are currently mounted in banks and enrollment stations, but the ability to have a mobile device available is not far off and would allow the United Nations to conduct policing patrols with biometrics. Another question regards whether a nation state should have access to a refugee’s U.N. biometrics record to ensure that the individual seeking asylum has interacted with the United Nations and can prove reliance and inability to subsist in such circumstances.

If NATO suspects a known bad actor is seeking safe passage under the U.N. banner, does it have the right to use U.N. biometric information to confirm its suspicions? Does the information of Syrian refugees in Jordan get stored alongside U.N. biometrics enrollment data from refugees in Malawi and Sudan? Should refugee information be stored in the same database as U.N. biometric enrollment data of fishermen in the Gulf of Aden? Mixing data users, data origination, and data types increases points of vulnerability in the system.

The technologies and database infrastructures underpinning these systems are also wholly corporate and proprietary. For example, UNHCR has been contracting for several years now with Microsoft and a slew of smaller technology startups to establish their programs, which they plan to roll out to all of their in-field operations in 2018. Which means this data is likely to ultimately be under the stewardship of private interests with either lots of legal muscle to restrict it to their ends and wishes (absent a secret or unofficial federal warrant) or is subject to the whims of their technical caprices.

Though the obstacles are formidable, for those of us with citizenship status in both developed and developing countries we at least have a modicum of legal and political standing to fight for more protections and ethical use of our personal data. But refugees only have the voice that those of us concerned about their welfare and advocating on their behalf can lend them in these times. So, I think it behooves those of us concerned about data protections, as a matter of principle, to begin paying close attention to how the issues surrounding biometrics are also touching the lives of these most vulnerable. We can and should fold this issue into our agendas.

In my next post, I'm going to do my best to summarize some of the scholarly criticism surrounding the dangers and use of biometrics in the refugee crisis and make an attempt to formulate some concrete action steps that activists and other interested parties can take to hold UNHCR, host countries, and even corporations accountable to the long-term data protections that the displaced deserve. Stay tuned!


Introducing [dys+-(u)topia]

I'm thrilled to be launching this branch of my site and starting to put more time and effort into getting behind some of the great work that activists, technologists, journalists and scholars are advancing to raise concerns about the role of technology in our societies--particularly as it impacts human rights and ownership and control over our culture.


The writing and advocacy that I do here is distinct from that on my Worklog, although inevitably the two worlds may occasionally intertwine. I am, for example, steering my faculty scholarship in the direction of researching and documenting approaches for rescuing and preserving digital content as it gets gated and encumbered in commercial cloud platforms. That work aims to address some of the politics and power dynamics at work in big tech.

[dys+-(u)topia] is me flexing my muscles on a different level.

It is my disciplined attempt to deepen and develop my personal activism and take my engagement further on issues ranging from surveillance, blogger's rights, hacktivism, net neutrality, social media freedoms, protection of digital evidence, and others. I don't have any ambitions to make [dys+-(u)topia] a corner unto itself, but rather to help join a chorus and hopefully demonstrate the power that one voice on the internet can have when combined with so many others.

In the year ahead, I'll not only aim to post weekly on advocacy issues but I'm going to make an effort to get myself on the ground and do some engagement with those who are working person-to-person and institution-to-institution on those issues. I'm also going to be posting reviews and reflections on publications, films, documentaries and other media that strikes me as impactful.

So, stay tuned. Let's get started!