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NCI publishes consumer guide to biospecimen donation

October 11, 2014

Doctor Consults with Patient About Specimen Donation

As microbiology and gene sequencing techniques become simultaneously more advanced and financially acceptable, scientists are learning that various malignant diseases are more heterogeneous than previously thought. This can ultimately open the door to more personalized and effective treatments for different types of cancer and research is ongoing. This research requires a robust supply of biospecimens (both solid tissue and liquid specimens) from patient populations who have been diagnosed and treated for cancer along with biospecimens from control groups.

Although the Residual Tissue Repository program has been a part of the larger Surveillance, Epidemiology, and End Results (SEER) Program since 2003, the availability of more recently-collected biospecimens and updated patient data is a valuable resource for scientists who are developing new cancer therapies and diagnostics. To promote research, the National Cancer Institute (NCI) published a patients' guide to donating blood, tissue and other biospecimens for the purposes of scientific investigations.

Agency covers wide range of topics
According to the NCI, SEER registries identify cancer cases with information that includes demographics, tumor characteristics, some treatment data and, when applicable, survival or causes of death. The establishment of the Residual Tissue Repository augments this information by providing access to biospecimen stores that bolster statistical power, validate population-based specimen studies, present an opportunity for analysis of incidence and survival, and allow for additional research opportunities.

To help add to these stores and others like it, the NCI published a patients' guide titled "How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples." As encouragement for participation, it emphasizes that some patients and families take comfort in knowing that such donations can benefit others who have the same diseases that they do.

The guide notes that donations can occur both inside and outside the context of tissue collection during medical care for a disease. If a patient consents to this process, biospecimens collected in the former scenario will only be used once all necessary medical tests are performed, according to the publication.

Beyond the actual biospecimen donation, the guide answers patients' questions regarding:

  • Who decides how their tissues will be used;
  • How long their information stays in the system;
  • What protections are in place to ensure patient privacy;
  • What information needs to be mined from health records;
  • Why patients are not likely to find out the results obtained from scientific analyses of their samples; and
  • What happens in the event that individuals change their minds about donation?

Although there are few risks involved, the NCI does address the main concern, which is the potential release of patient information outside of the biobank and resulting loss of patient privacy. The NCI, along with other reputable supplier of clinical specimens, recognize this risk and go to great lengths to ensure that Protected Health Information is secure.

The NCI hopes the publication will provide answers to patients' questions about specimen donations, resulting in more patients allowing their clinical remnant specimens to go into research. This research may ultimately result in better treatment options for these patients, their families, and others who share their medical condition.