Survey for Individuals and Families with Huntington's Disease

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Welcome to this research, there's information below to help you decide if you want to take part or not:

This survey should take around 10 minutes to complete. Your responses to all questions are anonymous and will be used by us (non-profit academic researchers from the Wellcome Genome Campus in Cambridge) to inform policy about genetics and the way health professionals work.

How did this survey get to you?
The Huntington’s Disease Association and European Huntington’s Disease Network passed this on to families and individuals with Huntington’s Disease. They have not shared your personal details with us and we have no way of contacting you directly. Your answers and data will be handled SmartSurvey, which complies with GDPR regulation. You can find out more about this here.

We are keen to find out your specific views, based on real, lived experience of Huntington’s’ Disease. We will be comparing these to the views of people who have no experience of HD.

What this survey is about?

Genetic tests can tell us:

How likely we are to develop certain diseases in the future.
If conditions may be ‘inherited’, i.e. known to run in families.

In this survey, we want to explore whether you think:

HD should be private to the person who has it?
Do you think relatives, who are also at-risk from developing HD, have a right to know?

If a person has an inherited condition that could affect other members of the family, they are encouraged by health professionals to tell those relatives so they can access their own genetic testing if they choose. However, sometimes people don’t want their relatives to know about their own condition.

This causes an ethical dilemma for health professionals:

Should they respect the views of their patient not to tell relatives?
Or do they have a duty to warn these relatives?
Furthermore when should the law become involved in saying whether a duty exists or not?

‘In very exceptional circumstances it is acceptable for health professionals to break their patient’s confidentiality so that they can warn relatives about an inherited disease?’

In this survey we will show you 3 short fictional videos and we'll ask you:

What would you do if faced with decisions about sharing your family information?

We also want to know:

Might the availability of effective treatments affect your view towards the sharing of genetic information?

If you've got any worries about the survey or would like more information on the study please reach us at Ethics@wgc.org.uk.

If you are content with everything so far, then let's get going.....

(by they way - the red asterix just means you can't move forward in the survey until you've answered the question)

1. We are not collecting nor storing any personally identifying information about you and all your answers are completely anonymous. However, under GDPR (the regulation that governs the handling of data) there are two questions that are considered ‘sensitive’, the first asks how you are connected to the condition Huntington’s Disease and the second asks you to tell us your ethnicity. However, you choose to answer these questions, your responses are still anonymous and we cannot identify you from them.

If you are happy to proceed with the survey and answer these questions then click this box: *

I understand what the survey is about, what the sensitive questions are, how my data is handled and stored and I understand my participation is anonymous

2. How are you connected to Huntington's Disease (HD)? *

I have HD symptoms now
I’ve had predictive genetic testing for HD and have the faulty gene
I’m at risk of having a faulty HD gene, but haven’t had predictive genetic testing
I’ve had predictive genetic testing for HD and do not have the faulty gene
I’m related to someone who has HD and have chosen not to have predictive genetic testing
I’m related to someone who has HD and have not thought about predictive genetic testing yet
I’m caring for (or have cared for) someone who has HD
I’m connected to HD via my work (paid or unpaid)
Other (please specify):

3. Would you want to know, ahead of time, if you have an increased risk of developing ANY inherited condition? *

Yes
No
Don't know

Comments:

Survey for Individuals and Families with Huntington's Disease

2. How are you connected to Huntington's Disease (HD)? *

3. Would you want to know, ahead of time, if you have an increased risk of developing ANY inherited condition? *

4. When you hear the word “DNA,” how do you rate your understanding of what it means? *

5. When you hear the word “Genetics,” how do you rate your understanding of what it means? *