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 on the current precision medicine boom is important. Given that our work involves procuring patient biospecimens for use in research, we thought we would take it upon ourselves to conduct a study late last year, 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 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. Additionally, we asked about patients’ willingness to allow an extra tube of blood to be drawn at the point of care specifically for research purposes. We hypothesized that the majority would be willing to donate remnant specimens to medical research, and we also expected there to be predominant willingness to donate an extra tube of blood, but expected it to be lower than that for remnant specimens.Consistent with our hypotheses, the majority of Americans (83%) were willing to allow

Consistent with our hypotheses, the majority of Americans (83%) were willing to allow use of de-identified clinical remnants and associated data for medical research and nearly two-thirds were 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. Lab testing is clearly an interaction point where patients can be approached about their interest in contributing specimens to research, and given these findings that show interest and readiness to do so, is yet another reason why lab testing matters.

Other key findings from our study 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.

With ongoing media and public interest surrounding large-scale medical studies, such as the National Institute for Health’s Precision Medicine Initiative, people are increasingly more aware of the push for more personalized medicine and the need to tailor treatments to individuals. However, many patients remain unaware that biospecimen donation, whether of remnant samples or those collected expressly for research, is a simple and effective way to directly get involved and contribute.

Educating patients that their specimens can be repurposed or collected proactively for research is an important step in sourcing more biospecimens to study – and also gratifying patients who want to help. As our research indicates, informed patients are eager to donate both remnant specimens as well as extra tubes of blood for a good cause. Increasing awareness about the central role that a “philanthropic patient” can play in advancing medical research will enable researchers to more quickly develop personalized treatments and diagnostics, as well as honor and evoke patient preferences and satisfaction at the point of care.

About The Author

Chris conceptualized and founded iSpecimen® to address the growing need for human biospecimens by the life science research communities. He is responsible for the company’s growth and performance since its inception and actively oversees the corporate direction and many of the new strategic partnerships. Chris has successfully managed iSpecimen technology development and its expansion into additional partner supply sites. He received both his PhD in Immunology and his MD from Tufts University and completed his residency training, including one year as Chief Resident, in Pathology at Brigham & Women’s Hospital and Harvard Medical School.