Go Big Read 2010-2011 has officially started and we are starting with brand-new blog posts. This is the start of many posts on themes like medicine, research, ethics, and social change. Through the year, remember, tell us what you think! Leave us comments and suggestions to get involved!
Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” tells the story of African American woman who had her cells taken from her cervix in 1950 and became the never-ending cell strain known as HeLa. HeLa has been sent to labs and scientists all over the world and been used in research and studies, including the Polio cure. These cells were taken without Henrietta Lacks’s knowledge, partly due to the infancy of “informed consent.”
According to the National Cancer Institute, “informed consent” was started with “The Numbering Code” in 1947 to prevent unethical experiments like those the Nazis had performed during WWII. By the time Henrietta Lacks showed up at the hospital at John Hopkins, the concept of “informed consent” was very new. “Informed consent” has grown a lot since its creation over 60 years ago and has many more specific details that the first outlines. However, according to The New York Times article on what happens to DNA after donation, patients do not feel as “informed” as the idea implies.
The core of the article revolves around patient’s perception and understanding of what scientists do with their cells. Many patients have no problem consenting to have their blood used in different studies, but wish to be made known of the fact. Scientists and researchers are finding themselves in hot water both legally and ethically because the patients who donated their blood, DNA, etc find their samples are being used in studies different than intended. Using such samples in more than one study is not necessarily illegal; most consent forms explain that the samples you are giving will be used in “medical studies and research.”
However, patients and their families feel betrayed when such samples are made available to other scientists, like hundreds of families from Texas who found out their newborns’ blood, which is mandatory to be taken, was being stored and made available to other scientists for their research. Andrea Beleno, the mother of one of these infants, feels duped by the government and labs for not coming clean with her at the start. She explains to The New York Times that she would have given her consent if someone had asked, but it is disappointing and worrisome that no one did. These questions are causing the relationship between donor and researcher to change, forcing scientists to re-evaluate their methods and relationships that have been in place for decades. As the New York Times puts it, these scientists have not been trained to talk to the public.
Fortunately it is not completely bleak; scientists at hospitals like the Children’s Hospital Boston. The Children’s Hospital is trying to a get as complete of DNA holding as possible and therefore is asking for donations from every family that comes in. However, to set the families at ease, they have staff sit down and talk to the families about the process, the samples and what the hospital and other researchers will do with them. At the moment, it seems to be working; researches are getting consent from the patients who feel as though they understand what will happen with their samples. This new trend toward communication may lead to a more “informed” participant of “informed consent.”