If I have already joined SHARE. Can I now provide consent for the study of my spare blood ?
Please register again, the web site should now offer you the spare blood option. Alternatively you can email the SHARE team at email@example.com or call us at 01382 383230.
What if I've given permission for my blood to be used for research?
Every time you give blood for a routine clinical test, a small amount is left in the tube. This left-over blood can be valuable for research but your permission is needed to keep and use any of this sample. If you have given permission for your spare blood to be collected, no further action is required on your part. You do not need to come to the hospital, and no additional blood samples will be needed. Only spare blood that remains in the NHS laboratory after you have had a test requested by your doctor will be stored. These samples will be stored carefully and coded (de-identified) so they cannot be directly traced back to you as the donor. The samples will only be used in research studies that have been ethically approved and any samples used in research will have all personal information removed so that they cannot be identified as you.
What kind of research will be done on the samples that I give?
Recent advances in early diagnosis and treatment of diseases have been in part due to understanding genes and how people\'s genetic code can influence disease and their responses to medications. This is an important growing area of research as the discovery of genetic variations can be used to develop new, more effective diagnostic tests, and drug treatments that can be better tailored to patients. Many people in Scotland have already been involved in genetic studies. 10% of the Scottish population has already volunteered for genetic studies into diabetes, obesity, cancer, heart disease, asthma, COPD, eczema or heart disease. SHARE is helping expand the valuable research being carried out in these and other disease areas. You are giving consent for samples to be used for genetic research; this may eventually involve the reading of your entire genome (all 3 billion letters of your genetic code). In this way, information gathered may provide useful guidance for the development of new tests or treatments. You may be selected and invited for research studies based on your genetic information in the future. Your samples will also be used to study changes in molecules in your blood over time. For example, researchers might look at how molecules in the blood change during the course of a disease, or during treatments. Several samples may be retained over the course of your disease or particular treatment.
Why do you want my blood for research?
Using your blood researchers can look at, for example, the role of genes in health and disease or to develop new tests to spot disease earlier.
By joining SHARE you are giving permission for your surplus blood to be accessed and securely stored. You are also giving permission for this material to be used for approved research studies that may include genetic analysis and information to be combined with your coded medical data. When your information is used in this way, your privacy is protected and personal details which identify you are removed (the information is 'de-identified'). For example, if researchers are looking for blood from asthma patients to study the genes involved in asthma then they will get samples (after approval) from these patients (with no identifiers) but with knowledge that the samples came from asthma patients.
Will you take blood from me for SHARE ?
It is only blood left-over from samples you may give in the future for testing when you visit your doctor or hospital that will be used. You are simply giving permission for researchers to use any of the left-over blood following routine clinical testing. No more blood will be taken than is usual for standard medical tests. You will not have to give extra samples.
What will happen to my blood sample?
Any blood collected will be carefully and securely stored indefinitely for future research. Multiple samples from you might be kept. These will be used when the original sample runs out, but they might also be used to look at changes in molecules in your blood over time. For example, researchers might look at how molecules in the blood change during the course of a disease, or during treatments.
Samples of your blood may also be sent to other research groups, including outside the UK. As before, the sample will be de-identified so that you cannot be identified. The transfer of samples will be strictly controlled to ensure your privacy is protected and it is only used in ethically approved research studies, which could be funded by the public, charity or pharmaceutical sector organisations.
Who will look after my donated blood samples?
Blood samples that are collected will be looked after by special facilities within the NHS called human tissue biorepositories. There are four of these in Scotland and they all have been independently accredited to ensure that they follow best practice and relevant laws around the collection, storage and use of human tissue samples. They make sure that the blood samples are coded (de-identified), stored carefully and safely, and that they are only given to researchers for ethically approved research studies. More information about these biorepositories is at: https://www.nhsresearchscotland.org.uk/research-in-scotland/facilities/biorepositories-and-tissue-services
Who can take part in this part of the register?
The key to success in research is to be able to study as many people as possible, and therefore we are asking everyone in Scotland over 11 to take part. This is regardless of current disease diagnoses or drugs prescribed.
Will blood I donate for transfusion be used for SHARE?
SHARE does not access any of the blood you donate to the Blood Transfusion Service. If you are a blood donor please continue to donate.
Are there any possible disadvantages and risks of taking part?
As you don\'t have to do anything beyond completing the registration form, there is no extra discomfort, risk or side-effects.
What will happen to me if I take part?
The registration process will take just a few moments to complete. No further action is required on your part, you do not need to come to the hospital, and no special blood tests will be requested. We will only store blood that remains in the NHS laboratory after you have had a test requested by your doctor.
All of the stored samples will be coded so that they cannot be directly traced back to you as the donor. Your identity will be kept separate from your coded samples. Any medical information and samples used in research will have all personal information removed so that it cannot be identified as you.
What are the benefits of taking part in SHARE?
SHARE is making it easier to carry out health research in Scotland. This research is essential to learn about people\'s health and find better ways to treat and prevent disease. The more people get involved in research the better the help research can be to improving the future health of the whole population. You can keep up to date with research taking place on the SHARE website and our e-newsletters.
Will my taking part in this study be kept confidential?
All information which is collected about you during the course of the research will be kept strictly confidential.
What will happen to any samples I give?
A secure code number is used to ensure that your identity cannot be associated with the information obtained from the sample. The genetic data will be collected and stored in secure databases.
We will store some of the sample indefinitely for future research, so that we do not have to ask you again. However, we may retain multiple samples when they are processed by the NHS laboratories. This will be used when the original sample runs out, but will also be used for the analysis of non-genetic biochemical markers that may change through time. For example researchers may seek to examine how molecules change throughout the course of disease, or during specific treatments.
Samples may also be sent to other research groups, including those outside the UK. Some of these research groups may work with pharmaceutical companies. The sample will be anonymised so that you will not be identifiable from it. These transfers of samples will be strictly governed by Tayside Tissue Bank, to ensure your privacy and that appropriate research is being performed.
How long will the research last?
This register doesn't have a defined end date. We would ask your permission to store your sample and data (in anonymised form) so that we can consider it for use in future research studies. You are free to terminate your involvement at any time.
What if relevant new information becomes available?
We are at an early stage of understanding the importance of most of your genetic code, however it is hoped that if any clinically useful information comes to light this may be used to help your treatment. Researchers will produce reports and publications summarising their overall findings of how sequence information may be used to improve health and treatment. Your GP will not have access to your genetic data at any time. However, specific information, which may be important and useful in treating diseases, may be added to your records via strict NHS approved protocols to guide your treatment. For example, if it is found that you have a genetic feature that determines how well you respond to certain drugs, or whether you are prone to side effects of these drugs, then only this information would be included in your records.
Do I need to declare this for Medical Insurance?
The agreement to have future blood stored for research purposes, to be later used and sequenced, is not a diagnostic genetic test and therefore is not required to be informed to insurers.
What happens if I decide to withdraw AFTER my sample has been taken?
If you wish to withdraw your sample from the Bioresource , you simply need to tell us by phone and we will arrange for your sample to be destroyed and data removed from the register. We will confirm this by letter
What will happen if I don't want to carry on with the register?
You can withdraw from the register at any time without having to give a reason. We will remove your details and data from the register, and your blood samples will be disposed of after the clinical test has been carried out.
Will I be paid for taking part?
No you will not be paid for agreeing to the use of spare blood. You will not receive any payments from charges that may be levied for access to the samples by third parties including companies and researchers from UK or abroad.
Who has reviewed the study?
The East of Scotland Research Ethics Committee REC1, which has responsibility for scrutinising all proposals for medical research on humans, has examined the proposal and has raised no objections from the point of medical ethics. It is a requirement that your records in this research, together with any other relevant records ,be made available for scrutiny by monitors from the University of Dundee and NHS Tayside, whose role it is to check that research is being conducted properly and the interests of those taking part are adequately protected.
This register has also been reviewed by members of the scientific review board of the Wellcome Trust.