My Condition, My DNA - Shaping genomic sequencing uptake in UK healthcare
Interested in how the genetic information of you and your family could be used in the NHS?
Want to make sure healthcare decision makers listen to patients’ views on the use of genetic data?
Thanks to a new method of genomic sequencing it is becoming faster and cheaper to sequence large amounts of genetic information. At the same time, researchers are finding out more about how our genes can affect our health, and how we can use this information to improve healthcare through better diagnosis and treatment.
But how do patients and their families feel about the introduction of genomic sequencing in the NHS?
To answer this question, Genetic Alliance UK would like to invite you to participate in a series of engagement sessions that will explore the societal, ethical and practical issues raised by using genomic sequencing to collect large amounts of genetic information. The findings of this research will be fed straight back to those making decisions about how genomic sequencing could be used by the NHS in the future in the form of a ‘Patient and Family Charter’.
When and where?
The sessions will begin in early May. You will not have to go anywhere to take part – all of the sessions will be delivered using free online applications so that you can take part when and where is most convenient for you. None of the sessions will last longer than 45mins and there will be no more than six sessions, which will be delivered over the course of six weeks.
Project focus: how do you feel about the use of genetic information in the NHS?
This research project will help you get to grips with what genomic sequencing is, the ways it could be used in healthcare and why its use raises some important ethical, societal and practical questions. Most importantly, it gives you the chance to share your views, as a patient or family member, and have them heard by those making decisions about how genomic sequencing might be incorporated into the NHS.
What is involved?
The project would require you (and your family) to take part in a series of engagement sessions that you can access using a laptop, smartphone or other device connected to the internet. Sessions will be a mixture of interactive tutorials, where you will answer survey-type questions or be asked to make decisions in hypothetical scenarios; and live chats, where you can pose questions and make comments.
Who can take part?
If you or a member of you family has a diagnosed or suspected genetic condition we would like to hear from you. We are particularly interested in having families take part. This may include children under the age of 18, although an individual under 18 cannot take part without a parent or guardian.
If you are interested in taking part as an individual or a family we would love to hear from you! Please contact Alice Hazelton either by email (alice@geneticalliance.org.uk) or by phone (020 7704 3141) for extra details and for a participant recruitment form.
Alternatively - if you would like a copy of the registration form by email please contact John Mills john.mills@vasculitis.org.uk
This research project is supported by restricted grants from the Wellcome Trust, MRC and BIVDA.
