The Fine Print

I remember when the Body Worlds Exhibit came to my local museum. I couldn’t believe it -- those were real people. My dad laughed when I told him about it and said, “That’s why you really have to read the fine print when you sign up to be an organ donor.” Being an organ donor, I was horrified. As genetic research continues and breakthroughs are being made every day, contributions from tissue donors can be used for just about anything. A recent news story from Michigan State University (MSU) Today weighed in on the controversial ethics involved in genetic sequencing.

“More and larger biobanks are in many ways the future of health research,” explained Tom Tomlinson, PhD, director of the center for ethics and humanities in the life sciences, in the MSU Today story. “Their rise as a research tool means that sooner or later -- probably sooner -- all of us will be participating in research that we know nothing whatsoever about.”

When a person donates a sample to a biobank, certain precautions are taken to ensure they maintain their privacy. Namely, all possibly identifiable information is removed to guarantee anonymity, and once this has occurred, the donors sign a consent form allowing researchers access to their samples. The only problem is that the consent forms could authorize the potentially unrestricted use of those specimens regardless of the moral concerns of the donor. As the article notes, “some people may not want to be involved in publicly funded biobanks if the research would lead to private commercial gain. Others may not want to be involved in research on controversial issues,” while ethicists like Tomlinson insist that donors should be made aware of the intended use for their samples.

“Donors should have the information they need to decide if there are moral risks involved that might not be worth taking,” said Tomlinson. Later on in the MSU Today article, he would continue, saying, “It’s hard to tell a person exactly how their donation will be used, but what you can tell them is the range of uses to which it might be put.”

Some of Tomlinson’s recommended steps include: “ongoing summaries of research projects, written in plain English” for donors; prior notice to a donor if their specimen could be used in a possibly controversial case; and data-management systems, “in place to let donors withdraw their samples at any time if they take issue with the kinds of research the biobank supports.” With information is so crucial in the genetic age, the necessary steps must be taken to protect that data and the rights of the people who supplied it.