For the School for Poetic Computation Spring 2019 showcase, I made a piece called Informed Consent. Informed Consent is a projection mapping installation that places the viewer into the uncomfortable position of signing a consent form for a clinical trial. The desperate hands–which attempt to break out of the pages of the consent form–represent the suffering of the many people who have been exploited by medical experiments, medical practitioners, and even by the ‘informed consent’ process itself. This piece is an emotional remembrance of the experience I had in October 2018 after taking leave from work to support my father as he started a clinical trial to treat his cancer. It’s also a way of discussing one piece of the research I’ve been doing on medical racism. Hundreds of years of exploitative medical experiences have seeded a rightful distrust of the medical system amongst some Black Americans. After the Tuskegee Study of Untreated Syphilis in the Negro Male (conducted by the U.S. Public Health Service) was discovered to have experimented on 600 Black people without their consent between 1932 and 1972, Congress signed the National Research Act. This legislation required that researchers receive informed consent from all human study participants, but this alone has not repaired the strained relationship between medical practitioners and Black Americans. It’s clear that the effects of a long history of medical malpractice against Black Americans cannot simply be erased by an informed consent form.
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