The Chicago Tribune published Children’s Tumor Foundation CEO Annette Bakker’s most recent editorial on patient tissue, and how those providing their biomaterial deserve transparency and more input on how that material is used. Patient advocacy groups and biobanks committed to patient-first policies are crucial in driving change.
“Patients’ donations of tissue are being hoarded. That doesn’t help medical research.”
Imagine receiving the shattering news that your daughter has cancer. Suddenly, you’re battling for her life. In the midst of treatment, you’re asked to sign a flurry of consent forms for her tissue to be donated for scientific research.
Seeking to help others devastated by the same cruel disease, you agree. But in a twist, you’re never told how her tissue samples are actually being used — or if they ever get used at all.
You wouldn’t be alone. I lead the Children’s Tumor Foundation, a nonprofit dedicated to fighting a rare genetic disease called neurofibromatosis, or NF. There’s no cure for the condition, which causes tumors to grow on nerves. The families I work with are desperate for treatments. That’s why they sign the many lengthy “informed consent” documents presented to them at hospitals, asking for permission to use tissue taken for research. But they have no control over how those samples are eventually used. Often, specimens simply collect dust on shelves.
The same thing happens frequently to older cancer patients and those battling other diseases. Many have undergone a biopsy or provided another tissue sample for the purpose of testing or treatment. They often wrongly assume that their samples will be used to aid research and so sign out of a wish to help others.
Unlike organ donation, the market for “biomaterial” is largely unregulated. Hospitals typically provide it to what are known as biobanks, storage facilities that enter into partnerships with hospitals to gain access to tissue.
While health care providers must obtain patient consent for donations, they’re not required to tell patients that their tissues may be stored in a biobank — or that researchers may never have access to their samples.
