Many people participate in biomedical research and it is estimated that one in 30 of us is enrolled in a cohort study at any one time. These studies contribute to, and enhance, our understanding of health and illness and include the UK Biobank, which has collected blood, urine and saliva samples from half a million people. The Biobank is now going further, with plans to image the brains, hearts, bones and blood vessels of thousands of participants and carry out DNA analysis.
While most research proposals are carefully crafted, these kinds of scientific enquiry may also yield unanticipated information. What should happen if, while looking at fMRI scans of participants’ brains, a researcher notices changes or markers unconnected to the study but which may indicate a health problem? Or what if when taking baseline measurements, a researcher discovers a participant appears to have elevated blood pressure or traces of protein in the urine sample?
I received unexpected news from an optician, who found what turned out to be the first signs of multiple sclerosis during a routine appointment. This has made me personally, as well as professionally, interested in the implications of so-called “incidental findings” – whether or not a participant, or in my case a patient, has consented to the possibility that it might happen. With so many of us signed up to studies and technology increasing the amount and detail of the information we collect, developed thinking and guidance about how to manage this is only beginning to emerge.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.