Donating Biospecimens for Cancer Research: An Expert FAQ

October 12, 2017
Cathy D. Meade, PhD, RN, FAAN, and Clement K. Gwede, PhD, MPH, RN, FAAN

Dr. Cathy Meade is Senior Member of Health Outcomes and Behavior at the Moffitt Cancer Center and Professor of Oncologic Sciences at Morsani College of Medicine at the University of South Florida in Tampa, FL. Dr. Clement Gwede is Senior Member of Health Outcomes and Behavior at the Moffitt Cancer Center and Professor of Oncologic Sciences at Morsani College of Medicine at the University of South Florida in Tampa, FL.

What are biospecimens?

Biospecimens are materials from the human body. Sometimes, they are called “samples.” The biospecimens most commonly used in cancer research are blood, urine, saliva, or remaining tissue from biopsies or surgeries.

Why are these samples valuable for cancer research?

These samples contain a lot of information about the body, including genes and proteins. Biospecimens also tell doctors a lot about the biology of a specific type of cancer. This information helps researchers learn:

  • How cancer grows and spreads

  • How certain drugs work in different groups of people

  • New ways to prevent and treat cancer

Research that involves biospecimens is an important step to finding new and better ways to prevent, treat, and cure cancer now and for future generations.share on twitter

Why do researchers need biospecimens from different types of people?

Some people have a higher risk of certain types of cancer based on these factors:

  • Race

  • Ethnicity

  • Age

  • Gender

Moreover, these factors sometimes influence the following:

  • How certain cancer types affect individuals differently

  • How certain treatments work better in some individuals than in others

These different cancer risks may be due to genetics, culture, lifestyle, or behaviors.

To understand why, researchers need samples from men and women of different ages and different racial and ethnic backgrounds.

Who can donate biospecimens for research?

You may think researchers only need biospecimens from people with cancer. This is not true! Researchers compare biospecimens of healthy people and people with cancer. Differences between the samples help us learn more about cancer.

What happens to my sample once I donate?

It is either tested right away or put in a biobank. A biobank is a place for storing biospecimens. It’s like a large library. Only researchers who have permission may take samples to study.

How am I protected if I take part in a clinical trial that involves biospecimens?

Research that involves biospecimens has to follow strict guidelines. Further, the research is reviewed by an institutional review board (IRB). The IRB protects the health, safety, and well-being of people who join research studies. Only researchers who have research studies approved by the IRB can get biospecimens.

Do I need to give consent to donate?

Yes. Researchers can only use your biospecimens if they have your consent. It is your choice to consent or withhold consent. Your decision will not affect your medical care.

A consent form helps you decide whether to donate a sample or participate in a study. It tells you what you would be contributing to the study. And, it tells you the goals of the study. Someone on the health care team will explain the consent form and answer your questions. 

How are my privacy and health information protected?

The consent form describes how researchers protect your health information. For example, in some studies, your biospecimen receives a code. The code is a random number. This protects information like your name, address, phone number, or date of birth.

Does it hurt to donate?

If blood is required, the needle stick may hurt for a little bit. However, some biospecimen donations don’t require a needle. Biospecimens are often taken when a person is already getting a blood test or urine test or having a biopsy or surgery done.

How can I donate?

Ask your doctor or nurse about options for donating a biospecimen. Or someone at your treatment center may ask you to consider donating. Either way, always feel free to ask questions. Getting the answers will give you confidence about your decision whether to donate. 

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