The inherited risk of developing a disease can be detected via genetic diagnostics, namely via predictive gene testing. While genetic diagnostics has been in use since the 1990s, the recent growth in genome sequencing initiatives is revolutionising its scale and reach. For instance, with its commitment to sequence 500,000 whole genomes by 2023/24 and the establishment of NHS Genomic Medicine Service, the UK will soon see a massive growth in the number of healthy people identified as at risk of genetic diseases.

The fact that inherited risk to develop a disease is part of an individual’s make up makes it a risk that is often seen as more ‘manageable’ than that depending on external factors. Managing genetic risk is often understood as a responsibility towards both one’s own health and the health of close relatives: if you know that you are ‘at risk’ and that your risk could be passed on to your descendants, you should act upon it. While often associated with an aura of morality, genetic responsibility is, however, far from monolithic, with its framing depending on the type of disease, the particular gene mutation and the cultural background of the affected individual. 

Whether or not they feel in control of their risk, cancer gene carriers have been shown to develop specific information needs around what they can or cannot do to improve the quality of their life and that of their families. A key finding here is that the information needs of healthy individuals carrying a cancer gene mutation - so-called ‘previvors’ - are different from those of cancer patients and survivors. 

Previvors seek information about factors such as cancer risk statistics, strategies for disclosing genetic test results, health insurance coverage, surveillance and preventative action. These information needs also change depending on when previvors’ genetic test was carried out and on if, when and what preventative measures they are considering. The information needs of carrier of a BRCA mutation, for instance, are closely intertwined with medical and familial uncertainties. Medical uncertainty includes constantly expecting a cancer diagnosis sometime in the – near or distant – future, as well as following a protocol of cancer screening appointments, each potentially delivering a cancer diagnosis or a personal cancer scare. Familial uncertainty derives from memories of family cancer experiences, causing fear of reliving those experiences and of exposing one’s own children to both the same harrowing events and the possibility of inheriting the mutation.