Guest Post - Genetic Alliance UK: The My Condition, My DNA Project

 My Condition, My DNA

Would you be willing to take part in a research study to help us understand what patients affected by genetic conditions and their families think about the use of genomic sequencing in the NHS?

When the first person had their entire DNA sequenced as part of the Human Genome Project back in the 1990s, it took over 12 years. Today it is possible to have your entire genome sequenced in just a matter of weeks. A new technique has been developed which means it is faster and cheaper to do this, and as a result has the potential to dramatically change the way that conditions may be diagnosed and treated.

The aim of this research is to find out what patients and families think about genomic sequencing. This will involve exploring the ethical, societal and practical issues raised by the NHS using genomic sequencing to collect large amounts of an individual’s genetic information with the view to improving healthcare. As the ease of genomic sequencing and its potential uses becomes greater, people working in the NHS and other healthcare providers will be thinking about these issues and making decisions. By being a part of this research, you can help to bring the perspective of patients into the decision making process and form a key part of shaping how genomic sequencing could be used in UK healthcare to benefit patients.

What is the purpose of this project?

To help patients and their families understand what genomic sequencing is and how it might be used in a healthcare setting; and to understand from them their opinion of the ethical, societal and practical issues raised by using genomic sequencing in the NHS.

Who can take part?

If you or a member of you family has a diagnosed or suspected genetic condition we would like to hear from you. We are particularly interested in having families take part. This may include children under the age of 18, although an individual under 18 cannot take part without a parent or guardian.

Do I have to take part?

No, this research is entirely voluntary. Even if you do decide to take part, you are free to withdraw at any time.

What does the research involve?

We would like you to take part in a series of interactive sessions designed to provide information about genomic sequencing and find out from you what you think about the questions its use in the NHS raises. This will include thinking about how you feel about having your genetic information collected and how this information may subsequently been used to tell you about your own health or analysed for scientific research.

The process will involve you watching film clips, answering survey questions, making decisions based on hypothetical scenarios and putting forward your views. We will be using free online programmes and smartphone apps so that you can take part from the comfort of your own home. Support will be provided to make sure you are happy with using these types of media.

None of the sessions will last for longer than 45 minutes, and you can pause and continue whenever you like. In total, there will be six sessions, which will be delivered over the course of six weeks.

What are the possible risks of taking part?

The sessions explore a complex and challenging area of health policy. The only risk we foresee is that by asking you to consider difficult questions or scenarios, issues may arise that you or your family may find emotionally challenging. If this happens, you will be free to stop taking part in that session and withdraw from the research if you wish.

What are the benefits?

We hope that this research will provide you and your family with an interesting and valuable insight into how genomic sequencing works, what its potential uses are as well as the potential difficulties and down-sides; and how this could change the way you experience healthcare in the future. Most importantly, we will be asking you for your opinion so that, by taking part, you can help contribute the patient perspective on genomic sequencing to those making the decisions about its use in the NHS.

What if something goes wrong?

In the unlikely event that you want to make a complaint about the conduct of the research, or would like help or advice following the discussion, you can contact the head of the project, Buddug Cope (email: buddug@geneticalliance.org.uk).

Will my taking part in research be confidential?

We will not tell anyone that you have taken part in this research. Your contact details, any audio or written records of your responses during the study will be kept as encrypted files which only the research team can access. No one outside the project will have access to these. Your contact details will not be passed on to any other third party. We may use some quotes in future academic publications or conferences, but we will not use any names or identifying features in these. However, you should be aware that as is the case with any rare disease, it is not possible to 100% guarantee complete confidentiality or anonymity. For that reason, we will ask for your permission to use quotes. All data will be collected and stored in line with the Data Protection Act 1998.

What will happen to the results of the research?

After all the interactive sessions and live chats have been completed, your views will be collated to produce a ‘Patient and Family Charter’. This is a written document that will outline a series of recommendations from patients on how NGS can be best used in a healthcare setting. The Charter will be given directly to the key people and groups responsible for delivering genomic sequencing in the UK’s healthcare system. A copy of the Charter will also be sent via email to everyone that took part.

The results may also be written up into academic publications or presentations, however, you will not be identified in any publication. If you would like to see a copy of any publication resulting from this research, we would be happy to send it to you.

Who has organised and funded the research?

This research has been funded by the Wellcome Trust, the Medical Research Council and the British In Vitro Diagnostics Association (BIVDA).

Who has ethically reviewed the project?

This project has been ethically approved via University College London’s Institute of Child Health ethics review procedure.

If you would like to take part in this research or would like to ask further questions, please contact: Alice Hazelton (alice@geneticalliance.org.uk).

Finally... thank you for taking the time to read this information sheet.