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Sharing Your Genome in the NHS: A study of public opinion

Posted on September 4, 2018

Would you share your genome with the NHS? HeRC is recruiting participants for a public opinion study.

Blue picture of a genome

Background

Your genome is your own unique sequence of DNA – your body’s ‘instruction manual’, containing all the information needed to make you, run you, and repair you. It is over 3 billion letters long and is found in almost every cell in your body.

Genomic medicine services are part of the NHS and allow the genomic information about an individual patient to be sequenced and used as part of their care. This could include helping to diagnose a genetic disease or to decide on appropriate treatments.

What is the purpose of this study?

The aim of this study is to understand people’s opinions about how patient data could be used as part of a genomic medicine service. Genomic medicine services are part of the NHS and allow the genomic information about an individual patient to be sequenced and used as part of their care. This could include helping to diagnose a genetic disease or to decide on appropriate treatments.

We want to run a one-day discussion event to get people’s views on different ways that genomic medicine services might use patient data, now and in the future. We also want to understand what people would reasonably expect to happen and what they would like to be told about these uses.

Who can take part?

We want to understand the opinions of a wide range of people. For this part of the research we are looking to hear from people in the following groups:

• Adults (18 years and over) and young people (16 or 17 years) who have not used genomic medicine services before and have no prior special interest or knowledge of this area.

• Adults (18 years and over) and young people (16 or 17 years) who have used genomic medicine services before, and carers and/or close family members of people who have used the services.

What will the research involve?

If you take part in the study you will be invited to take part in a one-day discussion eventas part of a group. As part of this, you will hear from experts in genomic medicine, have the opportunity to ask questions and take part in group activities and discussions.
The event will last one day and you would be expected to attend for the whole day. Breaks, refreshments and lunch will be provided.
Events have been planned for the following dates and venues:

• Thursday 27th September – general public (18 years +), Manchester
• Saturday 29th September – general public (aged 16-18 years), Manchester
• Sunday 30th September – general public (18 years +), Sheffield
• Monday 29th October – patients and carers (18 years +), Sheffield
• Sunday 4th November – patients and carers (aged 16-18 years), Sheffield
• Monday 5th November – patients and carers (18 years +), Sheffield

We will ask your permission to record the discussions using a voice recorder.You will receive a reimbursement to compensate you for your time and to cover your local travel expenses.

Contact for further information

To find out more or to express an interest in participating, either:

• Visit https://apps.mhs.manchester.ac.uk/surveys//TakeSurvey.aspx?SurveyID=725247m2

OR

• Contact Lamiece Hassan at The University of Manchester.
Tel: 0161 275 1160 | Email: lamiece.hassan@manchester.ac.uk

This study has been approved by one of the National Health Service Research Ethics Committees (project ID: 244393).