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The Patient’s Predicament: Donating Biospecimens and Waiting for Cures

June 21, 2018

Neon ferris wheel

Imagine you’re very sick and your prognosis is tenuous. You’re taking some experimental drugs and praying for the best. Your doctor wants you to stay hopeful.

“A lot of scientists are studying your condition as we speak,” she says. “We could see a breakthrough at any time.”

In fact, she would like to collect blood and tumor tissue samples from you. She wants to make them available to the army of researchers who are working to cure your disease. “Researchers always need specimens,” she tells you, “yet they’re notoriously hard to get.”

Do you consent? Of course!

A surgeon will set aside tissue the next time you’re in surgery. A nurse then walks in and draws a tube of blood. If this doesn’t help you, maybe it will help someone else.

A huge disconnect: Donated biospecimens sitting idle in biobanks

What if you learned that the blood and tissue samples you provided would sit in a freezer somewhere or languish in a biorepository for five years or more? Would you be disappointed, shocked, angry, or a combination of all three? The reality is that many – too many –biospecimens never make it out of storage to aid in the research and discovery process. It’s an unintended, yet hurtful, waste.

In order to learn more about this problem, we recently circulated an online questionnaire to biobanks around the world and found:

  • The average stored specimen age was more than five years for 42 percent of the respondents to the questionnaire.
  • Another 24 percent said their specimens averaged two to five years old.
  • More than half (53 percent) of the participants said they collect more samples than they release to researchers.
  • Sixty-seven (67) percent of the participating biobanks cited underutilization of samples as a major or moderate biobank challenge – the most frequently cited of 13 choices.

Read full report.

Patients are generous

We researched patients’ attitudes toward specimen donation in 2015. Our study found that:

  • Eighty-three (83) percent of Americans are willing to allow the use of their remnant clinical specimens in research. That means that once medical testing is completed, any leftover sample could be de-identified and made available to scientists who might need them in the search for new diagnostics or treatments.
  • Close to two-thirds of the study sample were even willing to give an extra tube of blood if asked, for the sole purpose of use in research.
  • Blood donors and registered organ donors were even more willing to allow remnant specimen use, coming in at 91 percent and 90 percent, respectively.

 

Bridging the biospecimen gap

We are all fortunate to have patients who are eager, sometimes desperately so, to help find cures that can deliver much-needed hope and relief to so many. At the same time, their biospecimen donations, along with countless others, run the risk of aging into obsolescence while researchers who need them struggle to source the samples they need for their research.

Here’s the great news, this is all about to change.

Our mission is to solve these problems by providing an efficient and simple way for biospecimen samples to be shared instead of stored. Say yes to sharing.