Open Books-Open Minds: (Un)informed consent presentation

Matthew Leo, AE Staff Writer
October 10, 2012
Filed under Arts and Entertainment, Books

During free period on Sept. 26, Dr. Christine Marco, professor of Health Psychology and Chair of the IRB at RIC, gave a presentation pertaining to the book chosen as common reading for this academic year for an Open Books – Open Minds (OBOM) event.

The book, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot, tells the story of the titular Henrietta Lacks, an African-American woman who died of cervical cancer in the 1950s. Before she died, however, doctors took a sample of her cancer cells, and to their utter amazement, they never died.

To this day, her cells (called “HeLa” taken from the first two letters of her first and last names) continue to grow, have launched a multi-million dollar industry, revolutionized the medical field and ushered in an era of medical breakthroughs that were once thought impossible. Countless people have been saved by the medical data derived from the research these cells brought about, but there is one problem: there is no evidence that lacks, nor any member of her family, ever gave informed consent for the cells to be taken at all.

Marco’s presentation focused on the topic of informed consent, and related the Lacks case to a similar one that occurred in Arizona. The Havasupai tribe, a group of Native Americans who live in a secluded canyon, have an extremely high rate of diabetes among its members. Researchers from the Arizona State University approached the tribe asking for blood samples for use in the study of diabetes, along with other “behavioral and medical disorders.”

Years later, the tribe was shocked to discover that the DNA samples had been used for such wildly different researches as the study of inbreeding patterns, and the study of schizophrenia. They were told that their tribe beliefs (that state their people were born in their canyon) were false, and that they actually emigrated from Asia.

They tribe was understandably distressed. According to their beliefs, they viewed the samples to be parts of themselves and their loved ones, and they sought the return of the samples in order to give them proper funereal services. What followed were two lawsuits and a settlement where the Havasupai tribe was awarded, among other things, the samples back and $700,000.

Marco’s point was valid. Though it might be “for the good of all,” shouldn’t people have the right to control what happens to parts of their own bodies? Though it has been over 50 years since Lacks became the quintessential example, the practice of taking samples for medical research without clear informed consent is still occurring. It is a complicated topic, and discussions occurred during the presentation with people chiming in on both sides of the issue, causing an intelligent debate to break out.

But, as Marco pointed out, the obstacle of people striving for the right to control their own cells is something that many people fail to realize is an issue. It is easy to say these kinds of things are in the past, that we know better and that they don’t happen anymore. Yet every few years, we hear of more unethical and discredited research.

“The bottom line is as important as it is for us to advance knowledge, it is more important to respect people’s rights and privacy,” said Marco.

Open Books – Open Minds certainly began their calendar of events with a wonderful presentation, one that left those in attendance thinking. What could be higher praise that that?

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