Insurance and Genomics: Now

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. We regularly receive telephone calls and emails from people affected by genetic conditions who are finding it difficult or impossible to access appropriate or affordable insurance cover. Many patients are not aware what insurance companies are allowed, or not allowed, to ask them, or what they need to tell them when applying for insurance.


Why should I take part?

Genetic Alliance UK is working with the UK Forum for Genetics and Insurance to gather a better understanding of patients’ experiences, concerns and challenges when applying for insurance. This information will help us update the resources available on our website to meet the needs of our members and their patients and to reflect any new challenges arising from the development of new technologies like genome sequencing.


Who can take part?

You can take part if you or your family members’ genetic condition, or predisposition for a genetic condition, has shaped your experience of applying for insurance.

We want to hear your experience of applying for any of the following: life insurance, critical illness insurance, private medical insurance, income protection insurance or travel insurance.

How can I take part?

You can take part by completing this survey to tell us about your experience of applying for insurance:

The survey should take 20 min to complete. You can complete a portion of a survey and return later to finish the rest.

Will my taking part in this project be confidential?

We will not tell anyone that you have taken part in this survey. Your contact details and any written records of your responses during the study will be kept as encrypted files. No one outside the project will have access to these. If you chose to provide contact details, those will not be passed on to any third party.  We may use some quotes in future publications or conferences, but no personal information will appear.  Everyone’s responses will be pooled together and whilst your comments may be used you will not be quoted in a way that might reveal your identity to others. All data will be collected and stored in line with the Data Protection Act 1998.

What happens next?

In November, we will be holding a workshop to discuss some of the issues raised by respondents in this survey. During this workshop, we will aim to get a better understanding of patients’ experiences and challenges individuals and families affected by genetic conditions (and predispositions) face when applying for insurance. The workshop is likely to take place in London on a Saturday in November.

Once you complete the survey, you will be invited to take part in this workshop. Spaces for the workshop are limited and participants will be selected to ensure we cover a range of experiences and challenges.

What if I need more information or help?

Please see our information on living with a rare or genetic condition, or get in touch.