UK Biobank has my data, but I’m not worried. I know the benefits are too great to consider pulling out | Polly Toynbee
OhOne thing Britain is exceptionally good at is collecting and using health data for research, studying cohorts of people over several decades. A shiver of concern ran through the research world at this week’s announcement that UK Biobank data was being put up for sale on Alibaba’s Chinese site. Science Minister Patrick Vallance said further attempts to sell the data to China were expected. Some sensationalist reporting failed to demonstrate clearly enough that no names, addresses, NHS numbers or other identifiers were included, nor that the Chinese government responded quickly by removing the listings and that nothing was sold. But would there be a rush of participants withdrawing from this or other research programs?
The Biobank rushed to reassure its 500,000 members and, as a long-time volunteer, I received a message not only explaining what had happened, but also listing some of the invaluable research findings and cures already born from our data. Remarkably, a Biobank representative told me that only about 100 people had requested a withdrawal, and after each one was surveyed, only 50 withdrew – which is pretty impressive. Professor Sir Rory Collins, chief executive of Biobank, says he will personally speak to any anxious participants.
The list of good deeds using Biobank data includes a blood test revealing motor neurone disease years before symptoms appear, a single gene that causes almost all cases of Alzheimer’s, and a score to decide which overweight people have the most risk factors and should be the first to take weight-loss drugs.
Biobank collected exceptionally detailed data from its half-million recruits aged 40 to 69 in 2006: blood, urine, saliva, height, weight, hip and waist measurements, blood pressure, heart rate, grip strength, bone density, eye exams, lung function and fitness tests. Lifestyle questions included location, education, shift work, cell phone use, smoking, alcohol consumption, exercise, sleep, diet, mental health, and cognitive function, followed over time. It took five years to sequence everyone’s genomes. My samples are stored at -80°C so future researchers can look for causes and cures long after I die. All this extraordinarily valuable data is not intended for sale, nor for trivial or suspicious use, but only for good purposes.
The breach was apparently the work of rogue researchers at three Chinese institutions, Vallance revealed in his report to the Lords this week. It looks like someone was trying to make money off of information that is rightfully free and open to legitimate scientists.
The NHS, national and centralized, is the best repository of data for life. The United States, whose health care is run by private companies, cannot do the same. In other countries with more decentralized or insurance-based systems, it is more difficult to bring together fragmented national data. The NHS is largely responsible for making life sciences a truly promising growth sector.
Longitudinal studies have been a research gem, enabling projects such as studying children born in the same month who are then followed throughout their lives. In the UK we followed groups of people from 1946, 1958, 1970, 1989-90 and 2000-2002 and a new study now includes 30,000 babies this year. Longitudinal studies of all kinds have revealed the link between smoking and lung cancer. Others concerned the supreme value of early childhood education, preventing at least 100,000 premature deaths worldwide by finding the safest sleeping position for babies, and the lack of social mobility after the age of five.
The Use My Data organization, founded by cancer patients grateful for the research that saved their lives, campaigns to inspire people to join research projects, helping researchers design transparent and reliable data systems. They face the world of paranoia, conspiracy and deception.
The lack of panic after the Biobank theft caused the researchers to breathe a sigh of relief. But that has led some people to call for its data to remain locked, accessible only to those who want to visit in person, not to researchers who can use it outside. Fiona Fox, of the Science Media Centre, says some warn that the logic of absolute data security is to lock everything down so tightly that it becomes barely usable. Compare the risk with the inestimable value of 22,000 researchers using Biobank data in 60 countries.
But there are problems ahead: while AI accelerates the speed of crunching numbers, it also calls into question data privacy. “Even anonymized data can be deanonymized,” writes Simon Kolstoe, associate professor of bioethics in Conversation, because “AI tools are able to find complex patterns or connections in data that no human could ever discover,” thereby revealing the identities of those who provided their information. Protection will have to come from data use laws.
The really serious problem is the decline in the number of voluntary participants. A member of the Biobank committee, epidemiologist Prof Sir Simon Wessely, tells me he has seen this figure decline by 10% per decade due to “survey fatigue”. Surveys about waste after an Amazon delivery or pressing a feedback button after using an airport restroom have devalued important waste. “People think no one counts these results anyway,” he says. He points to the crisis at the National Statistics Office with its employment figures: they can’t get answers. He used to get 80% responses to his surveys about mental health in the military; this figure has now fallen to 40%.
Revoke your public spirit. One population-wide study currently recruiting is Our Future Health, seeking 5 million volunteers, so sign up here. I’ve done it before, it’s simple, all you need is a blood sample and a questionnaire to get a £10 token. Everyone benefits from it.
