“When we asked patients and families how much they want to know about their genetic information their immediate reaction was that whatever information the researchers or clinicians found out, they wanted to know too,” says Alastair Kent OBE, Director of Genetic Alliance UK, a charity that works to improve the lives of people affected by genetic disorders. “But there can be no one size fits all. We need to make sure that there is enough information and support available to allow individuals to make an informed choice about what is right for their situation. We need to remember this information belongs to the individual and they should be able to decide for themselves what they do and don’t find out about their health – which means we need to start thinking about how this can be recognized.”