By Stephen Ornes

What Happens to a Donated Tumor?

Tissue banks may hold the key to cancer research, but can we overcome the obstacles to unlocking their full potential?

By Stephen Ornes

Rimm’s sentiments echo those of many pathologists, who believe that hospitals and other institutions are the custodians of a person’s tumor. But pathologists don’t write the law. So far, tumor ownership has been tested only a few times in court, and there are no national laws on ownership.

As legal cases arise, individual courts have to forge a new path. So far, they’re in consensus, and not in favor of the patient: “According to the courts so far, [patients] don’t own the tissue,” says Smith.

In 1990, the California Supreme Court ruled that John Moore, whose spleen had been used in research without his consent, had no right to his excised cells. In 2003 a court in Florida ruled against plaintiffs who had donated tissue to a repository at the Miami Children’s Hospital Research Institute.

Most recently, in 2006, a Missouri federal court ruled that donors who had contributed their tissues to a repository at Washington University in St. Louis had no right to determine how their tissue would be used.

Nicole Lockhart, an ethics expert at the NCI’s Office of Biorepositories and Biospecimen Research, notes that these three cases are fact- and jurisdiction-specific. “We think [these decisions] may not fully represent, respect and recognize a patient’s interests,” she says. “Patients should know how their specimen is used, and they should be able to withdraw consent if possible in the future.”

The Office of Biorepositories and Biospecimen Research wants to establish clear guidelines for informed consent that maintain patients’ rights to their own tissue. That endeavor will be tricky: In the case of tumor donation, the issue of ownership can clash with patient confidentiality. Tumor donors may choose to have their tissues anonymized, which means the tissue is unlinked from medical records—a process that may diminish the usefulness of a tumor while safeguarding a patient’s confidentiality.

Anonymization may also prevent a donor from having control over the tumor’s future. “If a patient is giving their specimen to a biobank, and there’s no link from that specimen to an individual person, that person would be unable to remove the specimen from the bank,” says Lockhart.