A Very Special Data Privacy Day Message from your Friends at Genecloud
Ah, Data Privacy Day! The day when we pause to reflect on those (data) we have lost. Nowadays it’s so easy to get caught up in all the tinfoil and anonymizing proxies that we lose sight of the true meaning of Data Privacy Day. Sure, it’s fun to think about encryption algorithms and deidentification, but let us not forget that these are merely the visible trappings of much more important phenomena: choice, freedom, and control. On this Data Privacy Day I would like for us to think more deeply about privacy — not as a set of techniques and countermeasures, but rather as a reaffirmation of our own agency.
If you want to share, share. If you want to stay anonymous, stay anonymous. It is your choice: don’t let anyone else make that decision for you. Giving away access to your private information should be a quid pro quo, but too often it’s all quid and no quo. Even the most paranoid among us will acknowledge that there are absolutely legitimate reasons for sharing your information… sometimes. In healthcare, data sharing can be a beautiful, selfless act in which you intentionally exchange some of your personal privacy for the knowledge that your information is being used to help other people. If you are not careful, however, your altruism will do little more than inflate the valuations of companies whose business strategies consist solely of trading on your personal information. I am sure that their shareholders are grateful for your sacrifice. Let’s remember Henrietta Lacks, and learn from her example.
Science advances when the right researchers have access to the right data. Unfortunately, this has often led to wishful thinking about privacy — perhaps if we just check that the researchers are “legitimate” and remove the subject’s name and address, everything will be fine? In fact, no, things will not be fine. Recent work has shown that no amount of scrubbing can remove identifiable information from genomic data. The sooner we acknowledge this fact, the sooner we can get down to the serious questions: how do we create an environment in which access and privacy can coexist? How can we put patients and research subjects back in control of their own data? Genecloud was created to address these questions.
It’s an ambitious undertaking, and we need your help. If we, as individuals, do not demand control over our information, then we cannot expect anyone to cede it to us. Data holders will continue to take the most expedient course, which so rarely takes your privacy seriously. If we wish to change the status quo, we must make it inexpedient to ignore privacy concerns. So today, as you’re busy configuring your Tor exit node and checking the Bitcoin futures, take a moment to remember who is really in charge of your data. If that isn’t you, then by all means, do something about it!