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The Philanthropic Patient

December 17, 2015

Blood Sample in Test Tube

Studying patient attitudes toward the use of biospecimens and associated data for medical research is certainly nothing new. Hundreds of studies have been conducted on patient preferences regarding the use of both clinically-derived remnant samples, collected for medical testing that are leftover once testing is complete, as well as research-derived samples, that are collected for purpose from patients enrolled in specific studies. But one limitation amongst prior studies holds true: There hasn’t been a recent study representative of the US population. As precision medicine holds more promise today than ever before, understanding patient thoughts in the current precision medicine boom is important. Given that our work involves procuring remnant patient biospecimens for use in research, we thought we would take it upon ourselves to conduct a new 2015 study representative of the US population.

We commissioned research by an independent third party with the goal of understanding how willing Americans are to participate in medical research, specifically by allowing their remnant clinical samples to be used, provided the specimens and all data are de-identified and cannot be traced back to the patient. In addition to this, we also hoped to gain insight into patients’ willingness to allow an extra tube of blood to be drawn at the point of care. We hypothesized that the majority would be willing to donate remnant specimens to medical research, and we also expected there to be predominant to donate an extra tube of blood, but expected it to be lower than for remnant specimens.

Learn More About Biospecimens

Consistent with our hypotheses, the majority of Americans (83%) are willing to allow use of de-identified clinical remnants and associated data for medical research and nearly two-thirds are willing to donate an extra tube of blood. Two-thirds of the study population also indicated that they would agree to be contacted at a later date by their healthcare provider about potential specimen donation requests should they arise.

Other key findings were as follows:

  • Primary emotional drivers for allowing specimen use were altruistic and progressive; the least selected reasoning behind such donations was financial compensation. This is indicative of a truly philanthropic patient.
  • Patients who had exhibited medically philanthropic behaviors in the past, such as giving blood or registering to be an organ donor, were even more willing to donate their clinical remnants: 91% of blood donors and 90% of registered organ donors, respectively.
  • While federal law does not currently require patient consent for the use of remnant, de-identified specimens, 69% of the population would like to be asked.

For more information on donating biospecimens, and to download the white paper in its entirety, please visit the following resources:

World AIDS Day & an Unexpected Way to Give
Infographic: The Value of Human Biospecimens for Cancer Research in the US
Whitepaper: Patient Attitudes on the Use of Clinical Biospecimens for Medical Research

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