It is perplexing how the websites of large internet companies continuously adapt to me. It looks like the entire business activity of Amazon was about the musical artists I listened to yesterday.
These companies evidently collect data about what I search out on their websites and automatically adapt to my computer, making the presentation of products as attractive as possible to me.
It is rather annoying to get one’s own internet history in the face like that.
The example illustrates a common property of personal data. When data about me are collected, the data sooner or later return to me: in the form of an adapted website; in the form of a demand to pay tax arrears; or in the form of more expensive insurance premiums.
No one would bother to collect my data if they did not intend to return to me on the basis of the data.
Me, me, me: my data are about me. Sooner or later they come back to me.
There is, however, one brilliant exception from my data’s stubborn tendency to return to me: research. When researchers collect my blood sample or ask questions about my health, they are not interested in my person. My data will not return to me in any form.
Researchers are interested in general patterns that can be discerned in data from thousands of people. If researchers should return to participants, it is to collect further data that (for example) can make the patterns of ageing appear.
Patterns, patterns, patterns: research is about patterns. It is not about any one of us who supplied the data.
I’m therefore inclined to see research registers as categorically distinct from the tax authorities’ data about my incomes. Researchers launch my data up into a depersonalized scientific space. Up there, my data hover weightlessly and my person cannot attract them back to me. They do research with my data. But it is not about me.
I don’t primarily have in mind the fact that researchers code my data so that the connection to me is obscured. I’m thinking of the elementary fact that they collect my data without any intention of returning to me on the basis of the data.
When the integrity of research participants is debated, it is important to keep this unique status of research registers in mind. The purpose of collecting scientific data about me is not at all about me. The purpose “scientific research” disentangles me from my own data.
Biobank research here encounters a difficulty.
Suppose that researchers discover in my blood sample a genetic disposition for a disease that can be prevented if measures are taken in advance. Should they then take down my data from their depersonalized orbit in scientific space, and inform me about the disposition?
It may seem obvious that they should inform me. But it would simultaneously be a departure from how science typically treats personal data without intention of returning to participants on the basis of the data.
How should biobank researchers handle discoveries about individual participants that may save their future health? This important and difficult question will be investigated in the dissertation work of our most recent doctoral student at CRB, Jennifer Viberg.
I’m certain that the Ethics Blog will return many times to Jennifer’s work on incidental findings in biobank research.