A number of nuanced and multilayered ethical conundrums have accompanied the arrival of the age of the genome, including a murky morass of questions about how much you may want to know about yourself and how much you can control who can access your genes.
Playwright Deborah Zoe Laufer took a look at these issues and saw the stuff of gripping drama, so she wrote a play that spins some of these ethical threads together into a dramatic yarn, the Cleveland Plain Dealer reports.
She says Informed Consent was inspired by an interesting legal case in which the Havasupai tribe sued Arizona State University because samples tribal members had donated specifically for use in diabetes research was allegedly used in a range of other studies. The tribe, which believes their members' blood is sacred, said they only consented for the diabetes research because it was wreaking such havoc on their community.
They later said they discovered that researchers were using their DNA to study problems such alcoholism and schizophrenia, as well as migration patterns that conflicted with their own origin beliefs.
Even if the Havasupai/ASU case, which the university settled in 2010, may not have ever involved any unethical research, as science writer Ricki Lewis said last year, calling it "a fairly tale," the affair certainly offers an excellent cultural landscape to hang a dramatic story upon.
Laufer is not a stranger to using science as a storyline; she previously wrote a dark comedy that involved the Large Hadron Collider, Stephen Hawking, and the Apocalypse, the Plain Dealer's Andrea Simakis writes. She also says she has an attraction to "morally ambiguous" stories and the sometimes tense intersections where science, religion, and culture all meet.
Her play also adds another layer to the ethical puzzle, as her protagonist researcher is a woman confronting the prospect of early-onset Alzheimer's and thinks there may be possible solutions or leads to treatments in the tribal blood.
The researcher, a genetic anthropologist, also has a daughter and would like to find out about her risk for the disease, while her husband urges that the little girl be allowed to live out her life without the burden of worrying about this disease of aging.
Laufer says she intertwined her character's stories and ethical themes to create "a hot, juicy, messy, terrible conflict for them to go through."
Her play, which takes the stage April 18 at the Cleveland Play House, was funded by the Ensembl Studio Theater/Alfred P. Sloan Foundation Science and Technology Project.