UK Biobank Data Breach: A Minor Setback for Groundbreaking Research
The UK Biobank Data Breach: A Minor Setback
One thing Britain is exceptionally good at is collecting and using health data for research, studying cohorts of people over many decades. A shudder of alarm rippled through the research world at the news this week that UK Biobank’s data had been put up for sale on China’s Alibaba site, with the science minister, Patrick Vallance, saying that more attempts to sell the data in China were expected.
Understanding the Breach and Its Impact
Biobank dashed to reassure its 500,000 members, and as a longtime volunteer I received a message not only explaining what had happened but listing some of the invaluable research findings and remedies that had already sprung from our data. Remarkably, a representative for Biobank told me that only about 100 people inquired about withdrawing, and after each was spoken to, only 50 actually backed out – pretty impressive. Prof Sir Rory Collins, Biobank’s chief executive, says he will personally speak to any anxious participant.
The Value of Biobank Data
The list of good done using Biobank data includes a blood test revealing motor neurone disease years before symptoms arise, a single gene behind almost all Alzheimer’s cases and a score to decide which overweight people have most risk factors and should be first for weight-reduction drugs.
Challenges and Future Directions
Longitudinal studies have been a research jewel, allowing projects such as studying children born in the same month who are then followed throughout their lives. In the UK we have followed groups of people from 1946, 1958, 1970, 1989-90 and 2000-2002 and there is now a new study recruiting 30,000 babies this year. The organisation Use My Data, which founded by cancer patients grateful for research that saved their lives, campaigns to get people to join research projects, helping researchers devise trustworthy transparent data systems.
The Future of Health Data Research
Summon up your public spirit. A population-wide study recruiting now is Our Future Health, seeking 5 million volunteers, so sign up here. I’ve already done so – it’s simple, just a blood sample and a questionnaire gets you a £10 token. Everyone benefits.