How You Can Help Medical Researchers

By the National Cancer Institute

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May 05, 2015, 04:38 ET

BETHESDA, Md., May 5, 2015 /PRNewswire-USNewswire/ -- The following article is part of the monthly Lifelines education and awareness print series that the National Cancer Institute provides to African American news and information outlets.

There are many ways to participate in medical research. One way is to join a clinical trial. Another is to donate a sample of materials from your body such as tissue, blood, skin, hair, nails, or urine. Such samples, called biospecimens, can be carefully analyzed by researchers working to prevent and treat diseases such as cancer, diabetes, Alzheimer's and other diseases. Biospecimens may also be stored to be used for future research.

People from all backgrounds and communities choose to donate biospecimens. Opportunities to donate a biospecimen arise when you are scheduled for surgery, or for a biopsy, which is a procedure to look for cancer, or for some other medical procedures, even a simple blood test. Donating your biospecimens for research is entirely voluntary and, whether or not you decide to donate, there will be no impact on your medical care. If you change your mind after donating, you should contact your doctor to discuss the options for withdrawing your permission. You have the right to withdraw biospecimens and information that have not yet been sent to researchers.

Keeping your identity private

It is understandable that people may have concerns, particularly about the privacy of their medical information. But biobanks typically have procedures in place to protect the confidentiality of personal medical information. You are entitled to ask any questions you may have about donating your biospecimens, and then decide not to donate if you are not satisfied for any reason. It is important for you to understand as much as possible about donating your biospecimens in order to make an informed choice about donating.

Your privacy is protected by the biospecimen storage facility, known as a tissue bank or biorepository, where your biospecimen will go to keep it safe and in good condition after you donate it. The professional collecting the biospecimen may need your name, address, phone number or social security number in order to associate your biospecimen with relevant information from your medical record, but this information will not be stored with the biospecimen itself. A computer assigns a random identifying number to your sample, and no researcher can ever learn the name of the person who was the donor. Federal laws protect your privacy by limiting who can have access to your private medical information. Federal law also prohibits employers or health insurers from discriminating against you or your family members based on your genes.

To conduct research using your specific biospecimen, researchers may need to know your age, gender, race, or ethnicity, or even your family history and the details of your medical condition and treatment. But these are all ways to describe your biospecimen so that important research questions can be addressed; they do not refer to you as a person with name or other identifying information. A privacy wall is erected by the random number, and the biorepository makes certain that wall is never breached. There is always a slight risk that an accidental release of health information occurs, but the chances of this happening are very small.

A patient education booklet, How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples, is available online at http://biospecimens.cancer.gov/global/pdfs/MedicalResearchPatientBrochure-508.pdf.
A version of the brochure is also available in Spanish at http://biospecimens.cancer.gov/content/docs/como-contribuir-a-la-investigacion-medica.pdf.
Copies of both brochures can be ordered by calling NCI at 1-800-4-CANCER.

NCI leads the National Cancer Program and the NIH effort to dramatically reduce the burden of cancer and improve the lives of cancer patients and their families, through research into prevention and cancer biology, the development of new interventions, and the training and mentoring of new researchers. For more information about cancer, please visit the NCI web site at www.cancer.gov or call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237). More articles and videos in the culturally relevant Lifelines series are available at www.cancer.gov/lifelines.

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SOURCE National Cancer Institute