Our Work

Talking about genome editing

Last Reviewed 03/11/2016

Interested in how genome editing could shape research and clinic in the future?

Want to help us communicate on this topic in a way that is clear to all those interested?

20 years from now it is expected that many new cures and treatments will be delivered either as a consequence of research using genome editing or, directly, via genome editing derived treatments.

Patients affected by rare and genetic conditions are likely to benefit from these techniques. It is important that these patients, and the wider public, have access to up to date information on these techniques.

But are we using a language clear enough for anyone to understand?

What is the best way to communicate about genome editing?

We want to make sure we communicate in a way that patients identify with and that we use vocabulary and comparisons that mean something to our audiences. We want to help shape the way researchers, clinicians and the media talk about this topic. To achieve that, we need your help.

Genetic Alliance UK would like to invite you to participate in a series of workshops that will explore the language, messages and implications of genome editing. Together with the Progress Educational Trust, we will develop resources to include patients’ views on the best ways to communicate about genome editing. We hope these resources will prove useful to all those talking to patients about this topic. This project will be funded by Wellcome.

When and where?

The project will start in January and will run to the end of June. If you are selected to take part in the project you will be invited to attend four workshops. One of these workshops will be a visit to a research institute. The workshops will take place in central London and are likely to happen on a Saturday afternoon in late January, late March and late May. Each session will last between two and three hours. Each of these workshops will focus on a different topic around genome editing. If you register to take part we would need you to commit to attending all four sessions - this is important to ensure all participants are provided with the same information and opportunities for discussion.

We will provide food and refreshments whenever appropriate. If you have been selected to take part we will cover reasonable expenses.

What is involved?

The project would require you to take part in four workshops in central London. Prior to the workshops, we will circulate information to prepare you for the workshops. This is likely to include news articles or communications about genome editing. During the workshops, you will be asked to give your views on your understanding of the information. Together with other patients selected by Genetic Alliance UK, patients selected by the Progress Educational Trust, researchers, and science communication experts, we will aim to reach a consensus on the best way of talking about genome editing and analogies that transmit the correct message to our audience.

Who can take part?

If you or a member of you family has a diagnosed genetic or non-genetic condition or suspected genetic condition we would like to hear from you. You will have to be over 18 to take part. Due to limited capacity, we will not be able to invite all applicants to take part. We will select participants to ensure the results of the project are representative of those affected by a range of conditions, and from different age groups, genders, ethnicities and geographical areas.

If you are interested in taking part then please register here.

Please contact Mariana Campos either by email (mariana.campos@geneticalliance.org.uk) or by phone (020 7831 0883) if you have any questions or require more information.

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