Genetic Alliance UK, did a fantastic job of public engagement around the launch of their Patient Charter on genome sequencing. Putting on a full week’s worth of events is no mean feat, but they managed it extremely well. We need more groups to keep taking the initiative to get out there and help people educate and inform themselves.
The patient charter launch itself was fascinating. There are three stand-out issues for me:
1) Patients keep making it known that they want as much relevant information as they can get. The tiniest bit of information can help make a difficult situation, that little bit more bearable for them. So let’s move the conversation from ‘how much information should be made available?’ to ‘how are we going to make sure that information is delivered to patients?’.
2) Patients are happy to have their data put to use in research. Again, let’s move the conversation on to getting people involved and setting up processes.
3) The group that will help patients through all of this, is genetic counsellors. They play an absolutely vital role in the patient journey, providing a crucial bridge between the emotional side of dealing with a genetic disease as a family, and the clinic. That they are having to fight hard to become a regulated healthcare profession is baffling. That a clear plan to support, and grow the profession as we move into a genomic NHS is a big problem that has to be addressed right away.
It’s an exciting time to be involved in genomics for all of us right now. With technology opening new avenues for research and application, it is also giving us a lot to think about on a social level. Patients are an inspiration to many of us. But perhaps there’s even more that we should take from them. They’re determined to influence how genomics is integrated into healthcare. Are we as non-patients, or researchers, or scientists, or media doing enough to get involved and make sure that final decisions are representative of all of us?