'Biobanks' That Store Human Blood and Tissue Have a Consent Problem

In 1951, Henrietta Lacks, a poor Black farmer from Virginia, had some of her cells taken without her consent while she was being treated for cervical cancer. That sample later became the first "immortal" cell line, named HeLa, and has been used in research for decades. It eventually helped create the polio vaccine, gene mapping, and even cloning.

A lot of people made a lot of money from those cells. Lacks' family weren't among them. They didn't even find out about the cell line until about 25 years later.

More than half a century has passed since then—not to mention a novel, and an HBO original movie—and Lacks' story highlights a problem that persists. When people donate biological samples, such as blood or tissue, to science, they likely don't realize that seemingly basic issues around patient consent, and who owns the samples, are still murky. That's a problem, researchers write in a new paper out on Tuesday.

Donated biological samples are stored in facilities called biobanks, repositories for all kinds of biological material that researchers can access and use in their experiments. Need blood samples from smokers over 40? Biobank. Need DNA samples from single dads at risk of heart disease? Biobank.

Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta and co-author of this new essay, told Motherboard that a majority of people are excited about "banking" their biological materials because they see it as a way to help further medical research. But he argues that those participants won't know what research their samples are used for, and therefore can't properly consent. Even who owns these samples is a thorny matter.

Most biobanks, if they do obtain patient consent, will get what Caulfield calls "broad consent," he said, which means that participants will agree that their materials and biological information be used, but they won't get any more detail than that. There's a reason for this: It could potentially slow down research. Any additional notification to the participants would be very time-consuming for larger biobanks, he pointed out.

"There are so many research projects associated with biobanks, if you were to get specific full consent for every research project, it would make doing a biobank practically impossible," Caulfield said. That challenge will need to be taken into account when improving the system.

In a previous study, published in 2014, Caulfield found that there was no consensus on whom the samples legally belong to—the participants believed they had the right to their materials, while researchers thought it belonged to the institution.

"If you think of all the interested parties, from pharmaceutical companies to the research institutions that are involved, you would think that after decades and decades of work, you would have the ownership issue resolved. We don't," Caulfield said.

His research shows that as biobanks continue to commercialize and partner with private companies, "the lower the trust" participants will have in the system.

"Think about the billions of dollars that have been invested in biobanking," Caulfield said. "Think about the millions of people all around the world that have been recruited to participate, and despite all of that, we're still not 100 percent sure about the consent and ownership issues. It creates a precarious situation."

Public perception is also a large factor in the consent debate. In 2009, Caulfield pointed out, parents in Texas went to court over the banking and use of blood samples from their newborn children, because they didn't consent to the samples being used for experimentation. The court ruled in their favour and ordered the destruction of millions of research samples. The case brought attention to the notion of consent around biobanks.

Caulfield said that his team would like to see a legal framework in place to determine a better method for participants to consent. In Finland, for example, participants can request information and have the right to refuse the use of their material in certain studies.

Since it's an international issue, jurisdictions will have to figure out a method that's appropriate for them. Caulfield also said there's the chance for interested parties within the biobanking industry that can influence those policies as well.

So next time you're donating something for medical research, be sure to ask where your samples are going.

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