Fiction, Human Rights, and Social Responsibility: Who Owns Our Data?

Friday, February 22, 2013

Who Owns Our Data?

Source: http://www.aaas.org/news/releases/2013/0216_machines_human.shtml
Date Published: February 16, 2013

Imagine yourself as a student walking into the university library and tapping your wrist against the sensor to open the door and get access. Better yet, imagine preparing for a trip to your doctor and leaving behind your wallet, your ID, and your medical records, and packing only… your body! Todd Coleman presented a new technology that allows machines to communicate with the body. This is an “electronic tatoo” that is the size of a postage stamp and the thickness of a human hair that can be used to monitor electrical signals from the body in a non-invasive manner. This device has remarkable applications such as monitoring laboring woman and seizure-prone infants. Most likely, technology is already being developed to not only monitor, but store and transfer data.

This poses important ethical, legal, and social questions. Who will own this data? Will the patient be allowed to access it themselves? Companies who want to prove or disprove symptoms and effects of their medication will want to perform statistics on large amounts of data. Will doctors gather their patients’ data and sell it for profit? Our data is being threatened in many ways, and endangering important human rights.

These devices could be developed not only capable of extracting data from the human body but also inputting data into the brain. Although the article poses important futuristic questions such as “Will hackers be able to control our thoughts through these new kinds of interfaces?” I think it obviates the first use that would come to mind in any new technology, profit. We can see this example in other data collecting technologies such as social networks. Large social-networking sites, such as Facebook, are walling off information posted by their users from the rest of the Web. Facebook uses it for directing advertisement and for trading ‘Likes’ and ‘posts’ data to companies in return for profit. I recommend reading this article ‘Long Live the Web: A Call for Continued Open Standards and Neutrality’ by Tim Berners-Lee to learn more about this.

Today, there are no global health benefits coming from all that data. In the other hand, data artist Jer Thorp imagines what uses we can devise from this kind of wealth of information. He created a model of how people are traveling around the world based on Twitter data collected over a 36 hour period. He proposed that this data is very useful for scientists for learning how diseases spread. In the case of our medical records monitored through these new “electronic tatoos”, the primary use will be to aid a patients’ health. But what will happen after the treatment is done? I believe that, as data making machines, we should be under control of who has access to and what it will be used for.

There are several points I think are important in the control of a patient’s continually updating health data. First is the location storage, the access, and finally editing permission. With the success of the internet, it might be possible that our electronic tattoos be constantly synchronized with a ‘cloud’, online server. Hackers might be able to access your data, or only the people you grant access to. In a time of crisis, I find corporations very untrustworthy of my data. Perhaps a pharmaceutical company could edit the data of a large group of people to indicate that they are positive in a disease. In turn, these people will have to purchase medications to treat this disease, thus increasing profit for the pharmaceutical companies. Therefore, I believe it is important to never let our guards down when it comes to fighting for our rights. Laws are constantly changing, some happen under our noses, being an active citizen will help protect your rights.