A survey of general awareness and attitudes about genetic testing and genetic research - Survey information sheet

Genetics Research Awareness via Community Engagement (GRACE) - Survey information sheet

Project Title: A survey of general awareness and attitudes about genetic testing and genetic research

You are invited to participate in a pilot study to help us understand your opinion and awareness about genetic testing and genetic research. This research is conducted by the Genetics Research Awareness via Community Engagement (GRACE) team, based at The Open University. You may have learned about our project and its research objectives at a community or online event, and they are also available via our website www.open.ac.uk/grace.

Below is information on how you can participate in our study and how your data will be collected and used. 

What will I be asked if I do agree to take part?

If you take part in the research, you will be asked to complete a short survey online. The survey includes questions about your awareness, attitudes, and opinions of genetic testing and genetic research. To help us analyse patterns in the responses we request some information about your personal circumstances and characteristics. We confirm that this data will not be able to be linked to you as an individual as the survey is anonymous. We also confirm that these are non-mandatory questions.

By submitting the responses to our questions, you are agreeing to participate in our completely anonymous survey.

To clarify, we are not asking you to contribute any genetic or biological sample or data to us. The research project is only about understanding your opinions and awareness of genetics.

Possible benefits of participation in the research

There is no immediate direct benefit to you in participating in this research, but you will be contributing to increasing awareness of genetic testing and research.

How will the data I provide be used?

No personal data, including names and addresses, will be collected, and your answers will be completely anonymous. Any data collected will be treated in accordance with the Ethics Principles for Research with Human Participants, and the project has gained a favourable opinion from The Open University HREC (Human Research Ethics Committee), project code HREC/4712.

Only summary-level results from the survey and related analyses will be shared publicly and will not include any information that can identify participants. The results will be presented in academic publications. It will also be disseminated via public outreach through OU media channels. Special emphasis will be given to return the conclusions back to respondent communities, and to provide recommendations to researchers and research bodies.

Consent and withdrawal

Your participation in the survey is entirely voluntary, meaning it is not obligatory.  As data is collected anonymously, once submitted, it cannot be linked back to the respondent, so the data cannot be withdrawn. By completing and submitting the survey, you are agreeing for your data to be used as described above.

Contact

If you have any further questions or comments, please contact us via email at grace.project@open.ac.uk.

If you want to raise any concerns with an independent person, please contact the Director of Research at stem-ms-research@open.ac.uk.