Getting Involved

If you decide to take part in this project, you will be invited to a one-off interview lasting approximately one hour. You will be given an information sheet and asked to sign a consent form before the interview. The interview will be in the form of a structured conversation where you will be asked questions about how you manage your collections and information.

You will be one of 60 participants who will be interviewed in England and Wales. You can withdraw from the study at any time. All information from the interviews will be:

· Analysed to explore common concerns for users and managers of genetic databases

· Treated with complete confidentiality

· Completely anonymised in any outputs from the project

As a participant in the study you are also entitled to attend two special events:

· A workshop for research participants. This will aim to provide a clear, accessible account of existing laws and governance provisions that are applicable to genetic databases and associated research activities in this country.

· A second workshop on the project’s key findings and policy recommendations. This will be aimed at professionals, policymakers, lawmakers, genetic database operators, researchers and other stakeholders.

If you are a researcher, clinician or a manager of a genetic database and would like to contribute to the project as a research participant then please contact Dr Webber by email or at the following address:

If you would like to learn more about Genetics, please Genetic Science Learning Centre at Utah University or the Genetics Society of America