The NHS has announced plans to offer the DNA kits to both healthy individuals wishing to pay the price of having their genetic information analysed and free to those with rare genetic conditions as part of their routine care. Those paying for the service will receive predictions as to their risk of developing certain conditions.
Despite the excitement behind the announcement, there is some concern from the pharma community. Anneke Lucassen from the British Society for Genetic Medicine and Helen Stokes-Lampard from the Royal College of GPs have both raised concerns about the scheme; firstly, in relation to the expectations patients have from this type of genome sequencing and secondly, the importance of protecting this type of highly sensitive information.
It is incredibly exciting to see establishments such as the NHS leading the charge in genome sequencing and seeking to gain a deeper understanding of rare diseases in this innovative way.
Notwithstanding the good intentions behind the research, it is important that extra care is taken to ensure that individuals' personal data is kept secure and people are supported throughout the process and beyond. For example, what follow up will NHS England provide for those paying individuals who are notified that they are at high risk of developing a genetic illness?