Understanding experiences of recruiting for and participating in genomics research
University of Oxford
About the study
The 100,000 Genomes Project, funded by the Department of Health, is the first project of its kind in the UK. Researchers will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.
In this study, we are looking for people who have been invited to take part in the 100,000 Genomes Project. It doesn’t matter if you took part or not. We would like to interview you about your experiences, feelings and thoughts about genomic research.
We would then, with your permission, like to put extracts from your interview on the website Healthtalk.org. The extracts might be in the form of video, audio or written.
Genomics is set to be a very important part of healthcare in the future. Part of its success will depend on how well members of the public accept and understand genomic medicine, including its risks and benefits.
By taking part in this study, you will help to improve the experience of other participants in the 100,000 Genomes Project. This will improve the likelihood of the project achieving its goals.
When will this study be recruiting?
It is recruiting now, until December 2016.
What will participants be asked to do?
We will ask you to take part in an interview with a researcher. You can choose if you would prefer this to be video-recorded, audio-recorded or written down.
If you choose for your replies to be written down, we can guarantee your replies will be kept anonymous, if you prefer.
The interview will usually take 1-2 hours. If you prefer, the interview can be split into two different occasions.
We will ask questions about your experiences of participating in genomic research, including:
- What has happened?
- What were your thoughts and feelings at different stages?
- How were you given information?
- How have you made decisions?
- What have been the good and bad parts of your experience?
The researchers will travel all across the UK to conduct the interviews. You can choose if you would like this to be in your home or in a location of your choice.
Who can take part?
You can take part if you:
- Have been invited to take part in the Genome 100,000 Project*
- You live in the UK
*It doesn’t matter if you agreed to take part in the project or not
Who is conducting the research?
All interviews will be carried out by Dr Sara Ryan, Senior research lead, University of Oxford
The study is a collaboration between the Nuffield Department of Primary Care Health Sciences, University of Oxford and Policy Innovation Research Unit, London School of Hygiene and Tropical Medicine.
Who has reviewed this study?
This study has ethical approval from the NHS Health Research Authority, and CUREC, the ethics committee of the University of Oxford.
If you are interested and would like further information or have any questions at all, please contact our research lead, Sara Ryan.
email Sara Ryan