UK: Civil rights fears over DNA “census”
More than 100,000 people, including children as young as 10, will be asked to provide saliva tests and DNA samples in a new annual survey of the lives, behaviour and beliefs of people in the United Kingdom.
The UK Household Longitudinal Study will replace the long-running British Household Panel Survey. It will be the most expensive and ambitious survey of its kind in the world, costing an initial £15m and covering 40,000 households.
“The UK is undergoing considerable socio-economic change,” said Professor Nick Buck from the Institute for Social and Economic Research at Essex University, which is developing the study. “We have an ageing population, increasing diversity of ethnic background and rising levels of instability in both working careers and family life. This survey will enable researchers to obtain unprecedented understanding of diverse experiences of the population over time, linking evidence about parents and children, following individuals through time and observing their experiences.”
But the plan has been denounced by civil rights campaigners. “I would not let my DNA details be taken in this way,” said Richard Clayton, the barrister representing the rights group Liberty in its fight to prevent police from keeping DNA samples of suspects later cleared of wrongdoing.
“My principal concern would be how clearly people are informed that their involvement in this study is voluntary and that, even if people do agree to take part, they are absolutely clear about the extraordinary amount of personal information that can be gleaned from such samples.”
The study will incorporate the existing survey, which has been running since 1991, but will ask those taking part to allow interviewers working for the National Centre for Social Research to take a saliva sample and allow a range of physical examinations. “The sample could be sent to a medical laboratory to look at indicators of health, such as sugar and cholesterol levels, and for genetic tests that use the DNA contained in saliva,” said Buck.
The sample will not be tested for diseases such as HIV but interviewers may ask those taking part for permission to store a small amount that can be used as medical tests become more advanced.” If a certain gene is found in the future to be associated with a certain illness, then being able to go back to previously gathered samples and testing to see how common that gene is will help to plan healthcare,” said Buck.
in The Observer
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