The needs of the many outweigh the needs of the few, or the one. Star Trek buffs will recognise the line from an exchange between Spock and Kirk in the 1982 feature film “The Wrath of Khan”, [SPOILER ALERT] as the science officer sacrifices his life to save the Enterprise and, with it, the life of his friend and of a few hundred people in the crew.
Well, many data sharing theorists and practitioners also think that the same should apply to your personal data. They’re not asking you to give your life, nor to publish your credit card number and expiry date in the open for anybody to abuse of it, but just to give your personal data selectively and for noble causes, such as medical research.
To an extreme, a few also hypothise that “data donation” should be made into a legal obligation, similar to the way a few countries are evaluating organ donation to be the default, unless people opt out.1 The EU General Data Protection Regulation is also limited to people who are alive, perhaps to create an opportunity for easier personal data exploitation, at least after the individual is deceased (recitals 27, 158 and 160).2
Among these thinkers is Hetan Shah, executive director of the Royal Statistical Society in the UK. In his role, Hetan has the privilege to spend most of his time “trying to understand the issues [relating to data], then ‘translate’ them and take that out to policymakers and other stakeholders”.3 Among these, is the use of personal data for the common good. His thought – and the roots of it in the work of John Sulston – are summarised well in several pieces he wrote recently, including an article for Nature.4 What if – Hetan writes:
National statistical agencies were given by law anonymised access to private-sector data sets under openly specified conditions? And…
Data sets such as the Human Genome Project were required by law to be openly accessible to the science community, preventing making the data proprietary as necessary for commercial exploitation instead?
Philosopher of information and computer ethics Luciano Floridi and his team at the Oxford Internet Institute have also published an entire collection of essays5 on the subject (available freely as open access!), focusing on medical data, discussing governance, implementation and ethics of posthumous donation. I contributed to the work directly, attending for DataKind6 to one of the workshops that set the scene.
It’s not just medical data. There are data sets of personal information whose high value to society is difficult to argue about.
Think of how valuable it would be to urban planning activities, for example, to have direct visibility of people’s commuting habits, perhaps enabling a dynamic allocation of resources to public transport that is a direct response to demand, day by day.
Imagine the energy saving advice we could give his family, if we could spot that Charlie spends half an hour in the shower (ha! teenagers…)
Picture the legislative action and campaigning that could be done to save people from critically indebting themselves, if we could identify a trend of increase in the dependency on financing.
This data is one mouse click from being available, as it can be captured by the mobile phone in your pocket, and by most services that work for you: your bank, your energy supplier, your Internet provider.
Of course, there is a clear conflict between making the best use of that insight and, on the other side, protecting both the privacy of the people described in that data and guaranteeing the free market and intellectual property rules by which we live. We are talking about a change in our culture; this is not about technology.
The medical practices that enable organ transplantation are a few decades old, but we haven’t yet solved the cultural and ethical riddle of making organ donation the default. How long before we will be able to have a serious conversation about data donation, too? One thing for sure [SPOILER ALERT] the potential benefits for society would be unprecedented.
- 1. See: https://edition.cnn.com/2018/02/14/health/new-dutch-law-organ-donors-bn-intl/index.html
- 2. See: https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A32016R0679
- 3. See: https://www.theactuary.com/features/2019/06/interview-hetan-shah/
- 4. See: https://www.nature.com/articles/d41586-018-03912-z
- 5. See: https://link.springer.com/book/10.1007/978-3-030-04363-6
- 6. See: https://www.datakind.org/