Centre for Research Ethics & Bioethics (CRB)

How people value risk information

2015-12-09

The Swedish SCAPIS study will identify individual risk factors for heart and lung disease. But how do research participants and patients perceive risk? And what do they want to know? Right now, two doctoral students are looking at people's preferences and perceptions.

Risk information is complex. Risk can be high or low, sometimes there is treatment, conditions debut at different ages, are more or less severe, sometimes hereditary, and sometimes fatal. Finding out what people want to know requires more than simple 'yes and no' questions. Whole genome sequencing will become more common in biobank studies, and Jennifer Viberg is on her way to finding out whether research participants want information about incidental findings in genetic and genomic research.

The SCAPIS (Swedish CardioPulmonary bioImage Study) population is large, collecting blood samples and health data from 30,000 men and women between 50 and 64. Hopefully, the results will be implemented in health care. Arvid Puranen is just starting his PhD, looking at how participants perceive risk for disease and how they would like health care professionals to communicate about it. Watch this space for updates!

By Josepine Fernow

Jennifer Viberg & Arvid Puranen

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