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Deciding to Donate: Six Things to Know

1. Research on tissue samples may provide information that will help prevent cancer, diagnose it and treat cancer patients in the future.

2. Depending on the type of tissue you donate and the way it is removed, you may experience pain at the biopsy or needle-puncture site, bruising or swelling at the place where the tissue is taken, and a risk of infection.

3. A donor usually gives up all ownership rights when donating tissue for research.

4. You probably will not receive the results of research conducted with your tissue sample.

5. Ethically, all research of any kind should be reviewed by an Institutional Review Board (IRB) or Ethical Review Board (ERB). Review boards analyze whether the anticipated benefits of research are worth the risks. They protect tissue donors by assuring voluntary participation as well as full disclosure of research procedures, risks, rights and responsibilities.

6. Laws and regulations exist to protect the privacy of identifiable health care information and to provide safeguards against the inappropriate dissemination of your medical information. One example is the Health Insurance Portability and Accountability Act (HIPAA) in the U.S. Your doctor will be able to answer questions about the laws and regulations in your country.

For more information, visit www.researchadvocacy.org.

Source: The Research Advocacy Network booklet “Why Is It Important for Me to Consider Donating My Tissue to Research?”