For the Donor

For the Researcher and Clinician

FOR THE DONOR

What is a research tissue bank or repository?

A research tissue bank or repository is a place that houses a collection of tissue acquired for the purpose of conducting research. It is different from a tissue bank which acquires and distributes tissues or organs (for example: cornea, heart) for transplants.

Where do research tissues come from?

During a person’s surgery, some tissue may be removed from a patient’s body to help in the diagnosis and/or treatment of his or her condition. Any tissue removed from the body will always be used first and foremost to determine the medical condition, and how the patient can best be treated. Sometimes, not all the tissue removed from the patient is needed to diagnose and/or treat the condition. Leftover tissues that are normally discarded or destroyed are useful materials for research. Choosing to donate tissue WILL NOT require removal of any extra tissue or change the care that the patient will receive in any way.

Why should I donate tissue and/or blood?

Human tissues provide the materials for researchers to study different diseases. Blood contains markers that may be indicative of the condition of the body, and can also be a source of DNA (the genetic material that distinguishes different people from each other) for studies of genes. Your samples will be used amongst many others in research studies related to your condition or to other conditions. Some of the research findings may help doctors and scientists develop new products, such as drugs and diagnostic tests leading to better prevention and care for disease.

Who can donate tissue and/or blood?

Anyone undergoing treatment at a hospital can become a tissue and/or blood donor. A prospective donor will only be asked to consider donation if it can be done without affecting his/her health. Donation will only be asked if the hospital that the patient attends has their own research tissue bank or is a frequent contributor institute to the Singapore Tissue Network.
Alternatively, your doctor may be working with other researchers on projects important to human health, and will seek your approval for the donation.

Who gets to use the donated tissue and/or blood?

Researchers at the hospital at which you are having your surgery or other Singapore research institutes. They must apply for formal approval from the hospital’s ethics review committee to use the tissue and/or blood for research that is scientifically sound, safe and ethical. They will ask for a certain number of samples from a particular group of people (for example, men over age 65). Samples that meet such requirements will be provided to the scientists. Scientists will not be able to ask for a specific person.

Do commercial companies have access to my tissues and/or blood?

In addition to not-for-profit institutions, your donated tissues and/or blood may also be provided to commercial organizations. Approval criteria are based on how collaboration with these organizations will benefit Singapore.

Will I find out results of the research?

Neither you nor your doctor will receive the results of research done with your donated samples. This is because research can take a long time and requires samples from many people before results are known. Results from research using your samples may not be ready for many years and will not affect your care right now.

Are there any risks to me from donating?

There is no additional risk to you during your operative procedure. There are minor risks and discomforts associated with blood sampling. This includes slight pain and possibly bleeding and a bruise at the needle site. Occasionally a person feels faint or light headed when their blood is drawn. If the blood is drawn during surgery while you are under anesthesia you will not feel any discomfort. Because the study results will not be entered into your medical record, your health insurance will not be affected in any way.

Will researchers have access to my medical records and will my privacy be protected?

In order for interpretation of research results, some medical information linked to the sample is needed. To provide the utmost privacy, your sample will be assigned a code number and the medical information given to the researchers will only have this code number and not your personal identifying information (like your name, address, NRIC number). This will make it very difficult for any research results to be linked directly to you or your family. Your code number will be kept on file with your name, address and NRIC number in a secure location accessible only to authorized personnel. These authorized personnel however will NOT have access to your tissue or the medical information that has been collected with it. Information that may be required for interpreting research results may include your gender, age, past health history, present illness and your family history.

Does the donation cost me anything?

There will be no cost to you if you agree to donate your tissue and/or blood for research.

Will I benefit from research done on my samples?

Your donation of tissue and /or blood is regarded as an outright gift. There will be no direct medical or personal benefit to you from donating your tissue and / or blood. Results of research may be beneficial to future patients.

Can I change my mind if I do not want to donate my tissue and/or blood after I have signed or donated?

Yes. You can notify the hospital and they will terminate your donation process or contact the repositories to destroy any unused tissue and/or blood that you have already donated.

Can I contact anyone if I have further questions?

You may call the Singapore Tissue Network Repository (64788488) and ask for the Repository Administrator for further questions.

FOR THE RESEARCHER AND CLINICIAN

Why does Singapore need a national tissue and DNA bank?

A coordinated nationwide programme of tissue collection will help to create a valuable resource of large pool of tissue and DNA samples that has always been the limiting factor for high quality genomics, proteomics and molecular research.
There are many advantages for a nationwide centralized facility for tissue and DNA bank which includes: a continuous funding necessary for building the expensive infra-structures to support a tissue and DNA bank (bioinformatics, clinical infra-structure for the collection, histopathology and clinical information) and ensuring samples are processed, quality checked and stored under a standardized operating procedure to ensure high quality research materials. This offers values over and above small tissue collections that may originate from different sources and processed with different protocols.
Furthermore, a national tissue bank will ensure an equitable distribution to researchers that do not have access to a local tissue bank facility.
Active participation between clinicians and researchers will promote multi-center research collaborations and serves as a nucleating force for attracting overseas collaborations from academia and industries R&D.
Standardized ethical processes and confidentiality measures will give clinicians the peace of mind that their patient’s privacy is protected. The logistics of the consenting, collection, sample processing and distribution will also be advised and handled by a professional body.
The establishment of a Steering Committee comprising of key clinicians and researchers in the country, together with the guidance from the Ministry of Health, will ensure an open and democratic governance which is inclusive, flexible and fair to all. Tissue accession will be judged by scientific meritocracy which is a critical requirement for success and excellence.