The ethics of UK Biobank – one of the biggest medical health studies ever undertaken – will come under scrutiny at a public meeting in Edinburgh on July 1. Local residents, including the 14,300 from the area who have agreed to take part in the UK-wide study, are invited to attend, together with representatives of organisations with an interest in medical matters, the security of databanks and associated issues.
UK Biobank is aiming to recruit half a million volunteers aged 40 to 69 over a three- to four-year period. Participants attend a 90-minute assessment session during which they provide blood and urine samples and information about their current health and lifestyles. They also have a number of measurements taken, including blood pressure, weight, lung function and bone density. With permission, UK Biobank will then track participants’ health for 30 years or more. Approved researchers will use the anonymised data to understand better why some people get particular diseases while others do not, potentially leading to the prevention and improved diagnosis and treatment of illnesses such as cancer, heart disease, diabetes and dementia. From the outset, care has been taken to make sure UK Biobank operates in line with a rigorous ethical framework. An independent body called the UK Biobank Ethics and Governance Council (EGC) advises on the framework and monitors the project’s compliance with it. The free presentation and discussion on July 1, which takes place from 6 to 7.30pm at The Hub in The Royal Mile, is a chance for the public to hear from the EGC, ask questions and voice opinions. A representative from UK Biobank will also be present. Those who attend will be invited to continue the discussion over refreshments afterwards. Professor Graeme Laurie, Chair of the EGC and Professor of Medical Jurisprudence at the University of Edinburgh, said: “As a Scot, I’m delighted that so many people from the Edinburgh area have come forward to take part in UK Biobank. Another 18,000 have volunteered in Glasgow. In all, the project has so far recruited about 114,000 UK residents and well over a quarter of them are from Scotland. “The EGC is committed to reporting publicly on its activities and to listening to the public’s views. We can then take these on board in monitoring UK Biobank’s compliance with the high ethical standards that have been set. “Everyone is welcome to come along to the Edinburgh meeting. It should be an interesting and lively session.”