In 2011, I was diagnosed with the BRCA1 genetic mutation, inherited through her Ashkenazi Jewish ancestry. Absent any illness, symptoms, or known family history of such cancers, merely having this defect dramatically increased her risk of developing ovarian and/or breast cancers. All consulting doctors and genetic counselors advised her to undergo significant surgeries, and to participate in ongoing genetic surveillance—always with the caveat that it was only “for her own good.” While heeding most of the advice, she and her husband (media producer and SF State professor (Jeff Jacoby) quickly realized that serious and compelling ethical considerations were in play. The risks of mapping and tracking specific populations, or of any security concerns presented by international databases containing vast troves of private medical, genetic, and racial data, were dismissed as trivial tradeoffs to save lives. Born less than a generation after the end of WWII, we’re acutely aware of the potential dangers of being tracked and profiled by biometric and ethnic markers. As artists, we needed to respond, and began conceptualizing a large-scale, immersive installation to present historical and present-day accounts of surveillance, transposed into a dystopian future where autocratic forces possess and abuse our genetic data. However, at the time, our observations and concerns were universally perceived as alarmist.
Fast-forward to today. As unregulated technology advances provoke governmental overreach, our artistic query is both an urgent issue for the present, and a critical opportunity for art activism. We’re learning how governments weaponize communication and social media technologies to foment division and spur violence, yet we continue to ignore the compounding dangers arising from increasingly interwoven medical and surveillance technologies. Law enforcement deploys racially biased surveillance technologies, and collects DNA from uncharged individuals, while innocent people are convicted based upon material in public genetic databases. American universities and corporations sell DNA and facial recognition databases and software to authoritarian governments, who perpetrate human rights abuses. We’re losing the battle to curtail racial profiling in voting and immigration restrictions, mass incarceration, executions, and “controlling” unarmed protesters.
For the past several years, I’ve been creating works that incorporate artifacts related to her genetic defect into mixed-media personifications of self. Although a number of these works have been exhibited and well received, the messaging hasn’t been sufficiently explicit. In partnership with Media Alliance, we’re designing a new approach to this project that contrasts my personal involvement with genetic surveillance with news reports detailing abuses of these technologies.
The images developed for the project up until now focused more generally on posing taboo questions about lack of current societal oversight and regulation on the use (and potential misuse) of our private data.
For “Branded by her Genetic Mutation” I drew from the nude model with watercolor pencil, and scanned the drawing into the computer. I then downloaded the unsuccessful application submitted by a pharmaceutical company attempting to patent the BRCA1 gene (containing my genetic mutation). Using digital tools I collaged a portion of my gene sequence into the nude. This imagery has been used to create unique life-sized monoprint-transfers on various fabrics, as well as digitally printed on fabric.
Two “Big Pharma Tried to Patent My DNA” works, are unique monoprint-transfers on vintage pillowcases. To create the imagery I downloaded the unsuccessful application submitted by a pharmaceutical company attempting to patent the BRCA1 gene (containing my genetic mutation). I then used digital tools to combine individual pages from the unsuccessful patent application with a modified self-portrait and WWII “Jude” star. For a third “Big Pharma” work, I digitally reworked and collaged a charcoal self-portrait collaged with page 15 from the rejected patent application, printed it on fabric, then traditionally collaged it on a distressed cradled wood panel, and reworked it with paint and oil sticks.
My damaged and disfigured dolls serve as disarming surrogates, allowing captions and titles to pose taboo questions about some of the harsher fears and realities of diagnosis, treatment, and navigation within “the medical maze” of probabilities and outcomes. The doll portraits begin as oil paintings, then are digitized, altered in scale and adjusted, then sometimes captioned with digitally hand-written text, and printed onto fabric.
The monoprint-transfers and mixed-media images are unique works. The fabric prints are NOT Giclée prints, which are digital reproductions of traditional mediums. Because the final version of these works resides in the computer, the paper or fabric prints are digital originals.
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