For Partners

Patient Perspectives

How do patients feel about contributing their biological specimens to research?

Across a variety of studies, that have looked at both remnant sample use and sampling for research purposes, patients are largely supportive:

  • Across studies, 53-90% of patients are willing to allow the use of their clinical discards.
    Report of the Public Responsibility in Medicine and Research (PRIM&R) Human Tissue/Specimen Banking Working Group, March 2007; Tool F “Patient Attitudes”
  • 81% of patients said they believe donation of human biospecimens is important
    “Public views on the donation and use of human biological samples in biomedical research: a mixed methods study”, BMJ Open, Celine Lewis, Margaret Clotworthy, Shona Hilton, Caroline Magee, Mark J Robertson, Lesley J Stubbins, Julie Corfield, August 7, 2013.
  • 75% of patients said they are open to being asked to donate their biospecimens to research.
    “Public views on the donation and use of human biological samples in biomedical research: a mixed methods study”, BMJ Open, Celine Lewis, Margaret Clotworthy, Shona Hilton, Caroline Magee, Mark J Robertson, Lesley J Stubbins, Julie Corfield, August 7, 2013.
  • 89% of patients agreed to donate remnant cancerous specimens when given a single statement consent form and 94% of patients agreed when given a slightly more detailed consent form.
    “High Rate of Consent to Bank Biologic Samples for Future Research: The Eastern Cooperative Oncology Group Experience”, Journal of the National Cancer Institute, Thomas Malone, Paul J. Catalano, Peter J. O’Dwyer and Bruce Giantonio, May 2002.
  • In one study of assenting tissue donors, 90% said that their willingness to donate was because of reasons including “you’re contributing”, it’s a “good cause”, researchers might “find a cure” and “it feels good to help”.
    “Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent”, Biopreservation & Biobanking, Braun Kathryn L., Tsark JoAnn U., Powers Amy, Croom Kristen, Kim Robert, Gachupin Francine C., and Morris Paul, April 21, 2014
  • Since its founding in 2007, more than 4,000 women have donated samples to the Komen Tissue Bank at the Indiana University Simon Cancer Center and more than 10,000 women also have donated DNA and blood to the Komen Tissue Bank. 
    “The Goodwill of Strangers Helps Build a Unique Resource for Cancer Research,” Oncology Live, Anna Maria Storniolo, MD, May 24, 2015