Am I doing what the public thinks is OK to do?
That was the question that came to mind as I heard Bioethics and Health Law expert Rochelle Style speak at a Health data workshop held at the University of Otago Christchurch this week. Rochelle spoke with clarity and demonstrated a great deal of expertise. I like the simplicity of Law – tells us what we can do, Ethics – tells us what we should do, and Social license – tells us what the publish think is OK to do. In this post, I want to focus on social license because when I asked a question about it, it became evident that this was the least understood or investigated of the three legs to ethical decision.
First, an example. It is legal for me to search Twitter for posts about prostate cancer. If I was to approach the NZ Health and Disabilities Ethics Communities saying that I was doing an observational study of publicly available social media comments on prostate cancer I may not even need to go for ethical review. However, would it be OK – according to the NZ public – for me to do this? What if in my report I anonymously quoted some of those twitter posts? What if I quoted some of those twitter posts and identified the person who made the post?
What is your reaction? Which is OK?
Now consider this, the print and online media use identified twitter quotes all the time. They effectively take what is public in one domain to an audience that chooses to follow someone and make it public to another audience who has not made that choice. In addition, consider that Twitter uses can block certain people from seeing their tweets. This suggests to me that the “social license” employed by the media is quite broad. Is it OK?
What if when you visited your doctor you were told by the receptionist that the consultation may be recorded for training purposes. There was no option to “opt out”. Would this be OK? Now, phone your bank or broadband provider. Did you get an option to “opt out”? They now have your voice recorded – a biometric that can be used to identify you – as well as details of the conversation. How long will they keep it for? Who can listen to it? How is the data stored? How can you ask for it to be deleted?
Hopefully, by now, you see that the concept of social license – what is OK and what isn’t – is not easy to tie down. For health science, trying to understand what the public think is OK and what they think is not OK is very important, though not well articulated.
Two organisations that are actively engaged in the discussion about the use of social license for health (and other) data are Te Mana Raraunga, the Māori Data Sovereignty Network and Data Futures Partnership. Their websites are worth visiting. Te Mana Raraunga talk of data as “taonga” (a “treasure” for a non-New Zealander reader). This really appeals to me and I think is a good place to start, whether as individuals or communities.
If our personal data is taonga, what are our rights and responsibilities over this taonga? How we answer this will depend on our own cultural, social, religious, and other backgrounds. For me, my data is taonga and I have a responsibility to use this treasure for the greater good – the greater good of those around me, and for generations to come. This is one reason I volunteer for health studies from time to time.
Regarding data as taonga belonging to individual patients helps me in my role as a scientist. It is not just about making sure I don’t inadvertently reveal something publicly about an individual, but that I utilise ethically and well the data that I have been given temporary guardianship over. For me, this means that I must be vigilant over the statistical techniques I use and cognisant of the most appropriate ways to interpret that data. Unfortunately, this is a much-neglected area of scientific ethics. The scientific literature, even in the most prestigious of journals, is full of error of interpretation and of statistical methodology. I regularly see even simple errors in journal articles I referee. I know I have committed some errors of these myself. What I believe is most important is that I take responsibility for improving the techniques I use and I improve how I interpret and communicate the results. This is not just about “better science” but about treating the data as taonga, about regarding myself as guardian, not owner, of the data, and recognising that I operate not merely under law and ethical guidelines, but under a social license. That license may be fluid, ill-defined, and somehow based on diverse views, but nevertheless it exists and needs to be understood and honoured.