Over 60,000 Icelanders have participated in an online personality test distributed by deCODE Genetics, a biopharmaceutical company based in Reykjavík. Many participants chose to share their test results on social media, which has subsequently raised data-privacy concerns.
Thousands of Participants
The test, which was approved by the Ethical Review Committee, aims to examine the effect of genetic variation on personality traits and how such personality traits relate to physical health. In consenting to the terms of the test, participants authorise deCODE to request medical information from other health institutions (those who have not provided deCODE with a biological specimen in the past, the terms state, will be invited to do so).
In an interview with RÚV last weekend, Kári shed light on the research project by explaining that the concept of Personality wasn’t clearly defined, but that it was considered an interplay of thought, behaviour, and temperament. “Upon taking a personality test, participants fall within specific groups, which relate differently to certain illnesses … we’re trying to understand how genetic variation relates to a group of individuals who share certain personality traits.”
Upon completing the test, participants can compare their results to the results of other participants, with regard to openness, emotional stability, extroversion, agreeableness, and conscientiousness. Many chose to share their results on social media.
Although Kári maintains that the information gathered from the test will remain anonymous and will not be sold to third parties – as such a thing would be illegal – many have nonetheless expressed privacy-related concerns, referencing a similar test employed by Cambridge Analytica in the run-up the 2016 US presidential election and Brexit referendum.
According to deCODE’s website, participants’ answers will be deleted from the server in two weeks’ time, but after that time, results will still be available online. “Complete confidentiality is guaranteed, and researchers are bound to secrecy regarding the information provided.”
In an interview on Monday, Helga Þórisdóttir, CEO of the Data Protection Authority, encouraged a level of scepticism regarding the provision of valuable personal information to deCODE. Referring to the fact that many participants had shared their results on Facebook, Helga stated: “Participants must be cautious; they shouldn’t be sharing this information on Facebook” (Helga also questioned deCODE’s choice of presenting a scientific survey as a personality test).
Responding to such criticism on Monday, Kári Stefánsson stated that individuals participating in similar deCODE tests in the future would not be able to share their results social media.