Why we need data rights

lang: en

Data is becoming the central force for change in society. As we increase the sophistication of our analytical tools, there is more and more pressure on decision makers – whether in companies or in government – to utilize data and "insights" in their deliberations. Unfortunately, this opens up many of these decisions to a dangerous hack: controlling access to data can easily determine the outcome of major decisions. Just take a look at some of the recent stories where manipulating data access was key to a decision:

Several states have or are considering passing laws that restrict the ability to film slaughterhouses. Perpetrators would be subject to punishment that could include being placed on a terrorist list. Video tapes of slaughterhouses are one of the key pieces of evidence for animal rights groups to push policies that encourage humane treatment of animals. By banning videotaping, these legislatures are trying to control the debate on animal rights by limiting the evidence that can be introduced.
For years, the National Rifle Association has used its lobbying powers to prevent the collection of gun data by the government. Furthermore, the Centers for Disease Control have been banned by law from considering any research into firearm violence and its effect on human health. Again, access to data becomes key to a major policy issue, in this case gun violence. Without gun data, policymakers are forced to choose actions based solely on argumentation and rhetoric, without the deep scientific research that would lead to the best outcomes.
Federal funding of comparative effectiveness research on healthcare in the United States is contingent on researchers not making formal recommendations about different medical treatments. This sort of research is used to show that two treatments – which may have widely different costs – have the same efficacy in patients. It is one of the best ways to reduce medical costs, since it prioritizes using the most effective treatments, not necessarily the most expensive. By preventing data on this sort of research from being released, pharmaceutical companies can continue to lobby doctors to choose more expensive, yet less effective therapies.

It is clear to me that one of the most important civil rights issues of the coming decade will be around access to data. As data becomes the key leverage point in many policy and business debates, the politics surrounding data will only continue to heat up. If you don't want a particular decision to be made, you don't have to argue against it, but merely ensure that the data needed to prove it is prevented from being collected in the first place.

These data rights are intimately entwined with the need for a right to the Internet, which is an on-going goal of many activists. But we need more than mere access to the web as our goal. We need a more extensive set of rights and principles enshrined in law and in business ethics to ensure that the best policies and decisions are being made. These rules include:

A strong rule against political meddling in research funding agendas. Neither the Congress nor the President should have the ability to politically influence the outcomes of research through either funding or policy mechanisms. Right now, the Food and Drug Administration already has this political insulation given its status as an independent agency fiercely protective of its freedom to operate. Other research agencies like the National Science Foundation, the Centers for Disease Control, and the National Institutes of Health should have similar protections.
Business schools need to teach the politics of data, and the ethical importance of ensuring that all possible data is being considered in business decision-making. Many business leaders are simply unaware of how data is manipulated (or are doing the manipulation themselves). Greater emphasis of this issue in core management classes would greatly help business performance.
More widely, we as a country need to have a greater debate on what information we have a right to access. Wikileaks was the first splash in this area, but now that the news story has tapered off, we have failed to sustain the deeper discussion that this leak of classified materials prompted. The First Amendment enshrines a variety of freedoms, but access to data is not one of them. We need to modernize our legal thinking around this issue to include the right to access data that doesn't fall into some exceptions like national security or trade secrets.

The rise of Big Data opens up a number of policy quandaries that we must confront in the coming years. It is crucial that we start considering the politics of data more fully, and carefully calibrate our thinking and our laws to ensure that decisions are made with the best possible science – not just based on the power of those with levers to the data itself.