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University of Wisconsin–Madison

Tag: Informed Consent

NIH Reaches Agreement with Family of Henrietta Lacks

The Go Big Read selection from 2011-12, The Immortal Life of Henrietta Lacks, by Rebecca Skloot, has continued to generate a lot of discussion across campus.  So today’s announcement from the National Institutes of Health is big news: 

The understanding reached with the Lacks family respects their wishes to enable scientific progress while ensuring public acknowledgement of the enormous contribution made by the late Henrietta Lacks. In addition, the understanding gives the Lacks family a seat at the table in reviewing applications for controlled access to Henrietta Lacks’ whole genome data. (NIH Press Release, August 7, 2013)

Analysis of the agreement has already appeared prominently in both The Chronicle of Higher Education and The New York Times.  Looks like it’s getting a lot of discussion in both locations, as well as from experts at UW.  So great to know that a Go Big Read book has garnered such sustained interest.  

Sarah McDaniel, Go Big Read

Visit to the “Informing Consent” Exhibit


A Display Case on the history of research at UW-Madison, informed consent, and the McCardle Laboratory for Cancer Research.

Recently a group of students visited the “Informing Consent: Unwitting Subjects in Medicine’s Pursuit of Beneficial Knowledge” exhibit at the Ebling Library for the Health Sciences. Noticing that the students were bent over the display cases, discussing artifacts and items with one another, and taking notes, I asked them if they were there for a class- as generally, twenty students, all in one place, for over an hour, when it is not a social event- is noteworthy.

They were here from Edgewood College, from their class, BIO 402- Cell and Molecular Biology. The students, taught by Fern Murdoch,PhD., had read “The Immortal Life of Henrietta Lacks” at the beginning of the semester and had written a paper about one of the scientific uses of HeLa cells. They were finishing the semester with a paper on the ethics of human tissue use. They found the exhibit to be a great jumping off point for their discussions. Their discussion centered on who owns human cells? Is the good provided by medical research more important that an individual’s claim on their own tissue? A number of students were particularly interested in the development of skin cultures in the Allen-Hoffman lab (which there is a case on in the exhibit) and where those cells came from. Another student brought up the issue of the rights, or lack of rights, of prison inmates to consent to participate in research studies. As Professor Murdoch wrote, “Overall, I think the exhibit contributed significantly to the students’ thinking about the ethics using human tissues in medical research.”

The exhibit continues until the end of March, 2011. If you or your class (or book club) would like a tour of the exhibit, or would like to come on your own time, we invite you to attend! Contact Micaela for more information: msullivan@library.wisc.edu