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A Rights-based Revolution?

by IEAG MEMBERS CARMEN BARROSO & KATELL LE GOULVEN

As data become more central to sustainable development, the immense scope for data to empower people is becoming apparent.  But alongside this opportunity are clear risks, as people around the world question the accessibility and privacy implications of the new world of data.  At the heart of issues like these—both the potential and the risks— are rights.  Some members of the panel have been asking: what would a rights-based approach to the data revolution entail?

using a mobileWe know we are not alone in asking these questions.  The panel’s initial consultations revealed a shared concern for data-related rights.  Indeed, around the world, issues of rights and data are being hotly debated by citizens, legislative bodies, civil society, and the private sector.  As we attempt to map the landscape of rights and data, we therefore seek your help!

If you have thoughts, expertise, or concrete examples on the following set of questions, please share with the panel by commenting below or by emailing them to undatarevolution@gmail.com with the subject line “rights-based data revolution.”

How do rights intersect with the process of collecting, analyzing and disseminating data?

Initial consultations have resulted in the following set of rights related to data.  What is missing?  Which rights should be prioritized in the context of the Panel’s report?

  • Right to an identity (right to be counted)
  • Right to privacy (in Europe: right to be forgotten)
  • Right to participation
  • Freedom of expression/ speech
  • Ownership: right to own your personal data
  • Right to access data about you (re-use, sale of data)
  • Principles of consent
  • Right to due process (how data is used, ie. how to regulate the algorithm)
  • Protection from discriminatory uses of data
  • Right to non-discrimination and equality (how data hides or shows inequalities among subgroups of the population)
What existing rights regulation, policies, or frameworks could be applied to data for development?

This might include frameworks from other sectors, ie. the right to be counted in the Convention on the Rights of the Child; or from other fields, ie. frameworks for ethical use of DNA data.  What gaps should be highlighted in the report, ie. areas where “new data” require altogether new norms, frameworks, and policies for a rights-based approach to the data revolution?

How can data empower people?

Many advocate for an SDG monitoring framework that is participatory and empowering to citizens.  Can data provide voice?  What IEAG recommendations would ensure that data support the right to participation, both in terms of data collection and data access?

Statistical averages can hide inequalities but granular data can infringe on privacy.

As decision-makers use data to target policies and programs, data needs to be disaggregated in different ways—for example by gender, geography, age and income level— to ensure we understand the circumstances of different segments of the population.  The more granular the data, the more powerful the potential to address the needs of all.  But there is a concern that such disaggregation might infringe on people’s right to privacy. What recommendation should the IEAG make to reconcile this dilemma?

What are we missing?

Please tell us any other thoughts you have on a rights-based framework for the data revolution.

 

Carmen Barroso is the Regional Director, International Planned Parenthood Federation, Western Hemisphere Region.
 Katell Le Goulven is the Chief of Policy Planning at UNICEF.
IMAGE: Using the u-report self-reporting mobile tool (UNICEF)

11 Comments

  1. I believe all the right questions are raised here; some are new, some are not but are recieving a better attention from the international community now.

    Still, what is missing is the right for the citizens of a country to adopt and change their own laws and regulations about data, including official statistics, and the counterpart obligation for all, including outsiders to abide by these regulations. As a practitionner of official statistics in several developping countries, I witnessed numberous cases (a majority) where the legal obligations are by-passed, on the ground that they are considered not relevent.

    A typical exemple is the statistical surveys that the national law requires to be formally authorised so that protection of secrety is legally garanteed to respondents; not all are authorised and many survey datasets are unlawfully acquired; most of the time for good reasons but by what the national regulation considers wrongdoings.

    Empowering citizens starts there. In any democracy, the right process is to discuss and propose changes in the on-going legislation that a Parlement would adopt with or without amendements. A landscape of rights and data is a needed resource for such process.

    Gérard Chenais

  2. Doy la bienvenida al Grupo Consultivo de Expertos Independientes, augurando gran victoria en una tarea en beneficio de toda la Humanidad. Acuerdo con los puntos de consulta y considero que, lo esencial es que en el caso de los Países que informen sus estadísticas, lo hagan demostrando la realidad de la situación en cada aspecto. Sólo la transparencia y veracidad de la estadística suministrada, hará que el Grupo logre sus objetivos y puedan concretarse los puntos post 2015. Por otra parte, creo que podrán cruzarse la información individual con aquella que posee el PNUD /veo insuficiente los parámetros de éste para determinar el índice de desarrollo y que no refleja la realidad/, además con el Comité para el Desarme ya que será imposible vivir en un mundo empoderado si continúan las guerras, los conflictos entre países y el sostenimiento del armamentismo, tanto el nuclear como el tradicional, inversión que los países podrían destinar a paliar justamente un mayor desarrollo de sí mismo y de la comunidad internacional. No será posible gozar de un medio ambiente protegido y sostenible… Gran tarea!!!! la Humanidad necesita imperiosamente de Líderes sinceros, diligentes, incorruptos, que sepan que su tarea está destinada a conceder al pueblo la mejor consideración poniendo en valor la verdadera dignidad de la vida de cada ser humano reconociendo los Derechos Humanos, sin distinción de grupo etáreo. Deseo fervorosamente que cada uno de los números con los que se trabaje, sea en sí mismo un cúmulo de beneficios para la Humanidad. Exitos, por un Planeta mejor en el que tanto la persona como el medio ambiente sean uno, inseparables, respetados sin ser discriminados. Es infinita e inmensurable la interdependencia recíproca de ambos por ello, cuando uno sea respetado, lo será también y a su vez el otro. Muchas Gracias!!!!! Felicitaciones y que la tarea sea de gran buena fortuna. Mirta Ceballos.

  3. Yes, the article nicely catalogs the rights people need in a modern world. Sure, there are important things also missing, like how to do it.

    I wrote a short blog post to explain one of them:
    What is a “rights” agenda, with ever increasing inequity? (1)

    It’s a use of “big data” to help recognize the behavior of the whole world economy, an example of my research method for exposing the organization of natural systems we need to work with (2). I think our systematically increasing economic inequity exposes definite questions about whether we know how to get beyond having high ideals in our effort to create a modern world.

    1. http://synapse9.com/signals/2014/10/16/a-rights-agenda-for-increasing-inequity/
    2. http://www.synapse9.com/drafts/InterpretingBigData-draft.pdf

  4. I am really encouraged to see this important call from two members of the IEAG. The Center for Economic & Social Rights has developed a short submission based on our experience of working on data, monitoring and accountability processes from a human rights perspective – as well as our work on rights in development contexts and the post-2015 development agenda. We urge the IEAG to adopt a human rights and equality-focused approach to the “data revolution”. In short, our core concerns are the need for the data revolution to 1) be participatory and empowering, 2) be linked to accountability processes to drive real lasting change, and 3) enable more effective identification and tackling of inequalities. We also highlight how human rights principles and tools can offer guidance in shaping the data revolution along these lines.
    The full submission can be downloaded here (PDF): http://www.cesr.org/downloads/CESR_Submission_to_IEAG_data_revolution.pdf
    Aside from the rights listed in the post, I would also add that principles and obligations related to economic, social and cultural rights – such as progressive realization, and maximum available resources – are also very relevant to the data revolution. Among other things, they remind us of the need to monitor progress on policy efforts and use of resources as well as outcomes.

  5. A similar thought process, as for understanding the global trends toward increasing economic inequity can be used for discovering new strategies for success in pursuing a rights agenda. You can use “big data” to study the organic shapes of the human rights discussions occurring around the world.

    I am not an expert in semantic analysis, but have found it very useful in a number of ways, to scan large text data sets for changes in word usage that expose the pivotal cultural experiences of the people writing the text. I’ve used comparisons of the Google histories of word frequencies obtained from scanned libraries of books, their “Ngram” tool. I’ve also used the histories of word use in magazines and newspapers. Today one might also use Twitter and other social media, and collect data on product and book sales. What’s important is for the text being scanned to be “neutral” and not influenced by the subject being explored.

    What might be possible, putting it all together, is to identify natural cells of social relationships and their interests, cultural “silos” of relationships identified by their ways of using language, in real time. There are security questions whenever new kinds of information are made available, so such maps should be abstract. The most valuable feature of such a “map” of connections, though, is the ability to then see who’s NOT connecting, the isolated constituencies.

    You’d see what conversations are intense in one group and missing from another, say between Twitter and the local newspaper as one possible divide., defining two communities with differing values and interests. That would be a great tool for understanding a society, and a great tool for social activist groups, letting them see how to stop “preaching to the choir”, for one example. It wold also give them insight into the words and interests of the groups they need to connect with, but hadn’t known how. Seen that way it’s a “partnership tool”, allowing people to see through the silo walls just enough to make some connections.

    One powerful example from Google’s Ngram tool for word use frequencies is a comparison of the usages of “complex” and “information overload” with the history of US GDP. The growth of GDP is also a measure of the complexity of the lives and tasks of the people living with it. The point in time, as the US economy continued to get bigger and change faster, when use of the word “complex” abruptly began to not keep up, was coincident with the explosion of use of “information overload”. I think that is profoundly revealing for the current US experience, of people dwelling on entertainment and losing interest in the world as it gets more and more complex.

    To reverse that effect and make the complex world interesting again, points to another of the basic aims of “big data” for public education, creating forms of information to reconnect people with what’s happening around them.

    1) https://books.google.com/ngrams/graph?content=complex&year_start=1800&year_end=2000
    2) https://books.google.com/ngrams/graph?content=information+overload&year_start=1800&year_end=2000
    3) http://synapse9.com/issues/US-GDPfullhist2013.jpg

  6. In first place, many thanks for the invitation to share thaughts and/or experience about Universal Human Rights, which is certainly a difficult and complex issue in my concept, and still more complex if we review the evolution of the “Human rights along the known history of the mankind”…….It is the same priority an understanding about rights for a person borned 50 years ago for instance in USA, than in: Russia, or China, or Iran , Irak, Jordania , Saudi Arabia or Thailand, or India or Vietnam?…….
    Could we say the same about every New World Country?…..or even, ..the new Europe considering “New Europe as EU principles?…
    I believe , fortunately with 78 yr old after being borned in a small but interesting Democracy as Chile ( 1937) an having the opportunity to search for my identity as human being since 1970 (working as independent as a way to learn about the Universal Concept , with residence in 5 Countries but involved in Projects in around 30 Countries- related to Development )……Search for identity in the intend of trying to understand the meaning of Human Rights….
    I want to point out as synthesis just the fact that the transformation of the World via the Globalization , an the high speed (thanks to the technologycal progress) in the communications impose the big challenge of the ideal Society ….but are we prepare as mankind for an acceptable, applicable (in reality) universal definition?….
    I believe , being conscious that untill allmost 200 years ago the slavery market still did exist an that today in small scale exist some how in a different scale such as Ilegal inmigration ( trafic) from Africa to Europe, Mexico or Center America,Mexico to USA, China to Thailand, or Asiatic Countries – Emirates, Arabien Countries, etc.etc.
    Today we could say that Borders do not exist for the Capital or Money Trafic around the World ( compare to 50 years ago ). also, we could recognize that the “strategic Universal Capitalism positionning” it is just starting ( via Stock Markets for instance) and simultaneasly we will be able from now on to verify how prepare the New Democracies are for perform their duties as citizens expect.?.
    Capital Marketing face to Politicien behave in Democracy probably will be the main challenge in order to reach a fair solution to Women´s Rghts plus a long list such as : Etnics, Workers, Education, Health, privacy, etc.etc.
    Therefore, just as sample, if we consider the benefits in using facebook or twitter, or Linkeding, or any application we have to admit that the more we use it ( regardless the way that our link it is promoted or used around for Market value purpose) a better universal communication it will be reached , but also, the system in general it is trying to preserve ” the expected established citizen´s behave “…….where an how or who consider which are the limits related to Democratic rights?- ,,Complicated equation to solve face to individual desire around the world , assuming a simultaneous honest request expecting a universal satisfactory probability to aplicate every where ?
    I strongly believe that as human being, we must keep trying to be able in reaching a reasonable an fair grade of happiness …but we must admit that the rights had been reached along the history thanks to the efforts of the individuals but as part of a Society…We must be realistic about which could be the right cruiser speed for a balance , progressive and proportionally satisfactory, keeping in mind that in the history the wars an worst period had been the result of excessive ambitions or intolerance…

  7. Hi Carmen and Katell,

    Its really great to see this post, thanks for sharing. Its something we at Oxfam have been investing a lot of thought into and are facing similar dilemmas. We have recently drafted a Responsible Data Policy and interestingly our starting point was a rights based approach. We framed as follows:

    A Right to be counted and heard
    B Right to dignity and respect
    C Right to privacy
    D Right to make an informed decision
    E Right to not be put at risk

    We’ve been involved with the Responsible Data Initiative spearheaded by The Engine Room https://responsibledata.io/ which has helped us to help tap into some existing resources and experts. We’d be very keen to share ideas with you and would be interested to contribute to this agenda. I wonder if you might be interested to arrange a conversation? My email is aodonnell (at) oxfam dot org dot uk I’d love to share ideas with you.

    Many Thanks,

    Amy

  8. Pingback: A RIGHTS-BASED REVOLUTION? | INTERNET GOVERNANCE: MAPPING INTERNET GOVERNANCE PRINCIPLES, POLICIES AND PRACTICES

  9. At the UN Human Rights Office (OHCHR) we really welcome this initiative to help ensure that human rights are at the centre of the data revolution, and would like to take this opportunity to share the following reflections:

    If the Post-2015 Development Agenda is to be truly transformative, it will need to go beyond the MDG monitoring of national averages and aggregate progress, and take a forward-looking approach to new kinds of data and data sources. The driving force of the ‘Data Revolution’ should be a central focus on ‘leaving no one behind’, giving priority to marginalized groups and giving substance to the principles of equality and non-discrimination, as well as taking a human rights approach to the data generating process. This would mean:

    1) Leaving no one behind by ensuring the collection of data disaggregated by social groups, in accordance with the grounds of discrimination prohibited by international human rights law, and strengthening capacities to analyze disaggregated data, measure the disparities between social groups and monitor the reduction of inequalities, in order to close the gaps between social groups.
    2) Embedding a human rights-based approach in the data revolution, which means promoting participation, empowerment and the right to information (of both rights-holders and their representatives, such as relevant national human rights institutions) in the identification, collection, processing and dissemination of data. Embedding a human rights approach also means measuring not only outcomes, but the means (legal, institutional and policy) necessary to achieve the targets to assess the extent of efforts being made.
    3) Taking a forward-looking approach to measuring the new goals and targets, so that the priorities of the new development agenda are not limited by existing data and data sources, but promote serious investment in the development of new data and data sources, going beyond traditional statistical data to include human rights events-based data, perception surveys and non-official sources of data which meet relevant statistical and human rights standards, e.g. verified data collected in human rights organizations, academia or civil society.

    These should be the priorities of the ‘Data Revolution’. Big data and new technologies may well be part of the solution where they help solve challenges to collecting more and better data, but should not be a distraction from the central priority of ‘leaving no one behind’. All efforts to utilize big data and new technology to monitor SDG progress must apply human rights safeguards, taking necessary steps to protect the right to privacy throughout the data collection, management and storage process. For further insights, examples and experiences about data collection and statistics from a human rights perspective, see OHCHR publications:

    • Human Rights Indicators – A Guide to Measurement and Implementation: http://www.ohchr.org/EN/Issues/Indicators/Pages/HRIndicatorsIndex.aspx
    • Who will be Accountable? Human Rights and the Post-2015 Development Agenda: http://www.ohchr.org/documents/publications/whowillbeaccountable.pdf

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