FAQ for patients and relatives

You may have received a letter from a research nurse at your intensive care unit or have taken part in GenOMICC while in hospital. Whether you are considering taking part in GenOMICC or have taken part already, thank you for involvement. Every DNA sample we collect is vital in understanding the differences in DNA between people that can affect outcome in critical illness.

We understand that you might have some questions. The most common questions we receive are answered below. If you have further questions, please contact us at genomicc@roslin.ed.ac.uk, or contact your local research nurse.

General Questions

Answer: This is a research study that looks at the DNA of people with severe infections and injuries. Infectious diseases and severe injuries affect millions of people around the world every year. Most cases are mild, but some people become very unwell and are admitted to intensive care. Our genes (DNA) can determine how much critical illness affects us. We want to find the genes that cause some people to be more sick. If we do, we may be able to develop better treatments for patients in the future.
Answer:

We use a blood sample to extract and analyse the patient’s DNA.

We will compare it to the DNA from the rest of the population, and from others with critical illness from different causes.

We would also like to store the patient’s DNA sample and use it for future ethically approved medical research. Some of this research may make use of facilities in other countries, or those provided by commercial organisations, but the patient’s sample will always be under the control of the GenOMICC investigators, and subject to UK regulations.

Answer:

No, there are no direct benefits to participation in this study. But we hope that this study may help other people who become critically ill in future. We will not inform you of any specific results from this research. This is because the tests, including genetic tests, that we will use are intended for research, and are not designed for clinical use.

We intend to publish our results on this website and make them available to the wider medical and scientific community so they can be put to the best use.

Answer: Yes. The samples that we hold for that person would be destroyed.
Answer: This website contains information about GenOMICC and we hope that the information provided here can answer your questions. However, if you would like more information about the study you can contact us at genomicc@roslin.ed.ac.uk.
Answer:

We are delighted to say that UK recruitment to the GenOMICC study is now supported by Fiona Elizabeth Agnew Trust (FEAT), the Wellcome Trust and the Intensive Care Society.

To see how FEAT supports our work, or to get involved in fundraising, please see their website.