Frequently Asked Questions (FAQs)
Why are samples important for research?
Letting researchers study your samples may help find new and better treatments for cancer and other diseases. Researchers use samples to look for ways to prevent, find, or treat health problems-as in Example 1 below.
Studying samples helps researchers:
- Learn how cells work
- Find causes or signs of disease
- Make new drugs and tests
- Find signs about who is more likely to get a certain disease or respond well to a certain treatment
- Tell if a type of treatment is likely to work
How will the caHUB collect samples for research?
The caHUB works with institutions like hospitals and research networks to collect samples from people like you. Even if you are healthy or do not have cancer, your samples are still very helpful for research
The caHUB also works with organizations to collect samples from deceased donors, who provide valuable specimens that cannot be acquired from living donors.
Some samples the caHUB collects are left over from routine medical procedures. Your doctor collects samples as part of your regular medical care. When you give permission, part of your collected samples that are not needed for your medical care can be used for research.
Other samples are collected ONLY for research. If you give permission, the hospital or research network may take extra tissue, blood, or other samples just for research studies. These samples are separate from your medical care. Samples from deceased donors are collected only for research; donors or their next of kin have consented to let their samples be used for research.
Why does the caHUB collect other information along with samples?
Studying medical information related to samples is an important part of most research. It helps researchers find links between the samples and certain health problems.
The hospital or research network will collect information from donors’ medical records and send it to the caHUB along with their samples. This information may include:
- Age, sex, race, height, and weight
- Medical history, like history of high blood pressure
- Family history, like history of cancer
- Smoking history
- Diagnosis of cancer or another illness
- How well certain treatments have worked
What will the caHUB be used for?
Samples and information stored in the caHUB will be used to study cancer and other diseases, such as diabetes and heart disease. Some of the research will look at how genes affect health and illness. Other samples will be used to support projects in "biospecimen science", which is the science of how best to collect, store, and distribute biospecimens for cancer research and for diagnostic testing. The caHUB will only be for research and won't store samples for organ transplants or blood transfusions. Some of the questions researchers may study are:
- Who is at risk for getting a disease and why?
- Who may have more side effects from treatment?
- How does a disease affect different age or ethnic groups?
- How do different collection, storage and processing methods affect biospecimen quality and research outcomes?
Do donors get to choose how their samples and information are used?
No. If you donate to the caHUB, you cannot choose how your samples and information will be used in research. Donors do not get to pick which research studies use or don't use their samples.
How long will the samples and information in the caHUB be used?
There is no limit on how long the caHUB can store and use the samples and information it collects. The caHUB will keep and continue using all samples unless a donor asks to have them destroyed or the biobank closes.
Anyone who donates to the caHUB can change their mind about letting researchers use their samples and information. If a donor changes their mind, any samples left in the bank will be destroyed or possibly returned to the hospital that collected them.
Donors who change their mind should know that:
- Samples and related medical information already given to researchers or used in research studies cannot be returned
- Research results that used their samples and information cannot be changed or stopped
Will donors receive results of research done on their samples?
No. If you donate to the caHUB, you will not receive personal results of any research on your samples. Research takes a long time and may not help patients for many years. Samples are also needed from thousands of people before research leads to results that are meaningful. Any meaningful results will be shared with the public. In the unlikely event that caHUB researchers learn something important about your health, although caHUB will not know your identity and cannot contact you, caHUB will contact the institution where you donate so that they can explain the results to you if the project you consent to allows for this information to be returned. The consent form that is signed prior to donation will outline the project and institutional policy for the possible return of results; if you have questions on this topic, please review the consent form.
What happens if research using caHUB samples leads to important new discoveries?
All caHUB study results will be shared with other scientists and the medical community. The data will be made available for future research use and for the development of medical treatments and tests. The caHUB is not designed to share profits with donors if any research discoveries result in drugs or other products that are sold.
How do I sign up to donate to the caHUB?
Staff at participating institutions where you are receiving care will explain how the caHUB works and talk to you about donating. They will also ask you to read a consent form that describes what will happen if you say yes. If you decide you want to donate, you must sign the consent form to be part of the caHUB. If you decide not to donate, your decision will not affect your medical care or your ability to participate in other research studies.
The Cancer Human Biobank (caHUB)
- You and caHUB
- caHUB Development
- Frequently Asked Questions
- Glossary of Terms