The Feminist Ethic of Re-membering
By Jane M.
I was inspired to donate tissue samples, derived from my mastectomy, by the idea of contributing to scientific investigation generally. I was especially invested in the opportunity to contribute to breast cancer research. And, given the particularly personal and radical nature of the surgery, it was no small comfort to know that these cells, toxic to me, might prove beneficial to others. Still, the contribution felt disembodied: pun both intended and fitting. The team member who secured my consent to use my tissue in this way was comprehensive in her rationale for seeking my consent and appreciative once securing it. Yet, also evident to me - the very moment I gave my consent - was that my connection to my own tissue was about to come to an abrupt end in the cold sterility of the surgical suite. Whatever fruit those cells might yield in the lab was destined to be as remote to me as were any youthful illusions of eternal health and invincibility. And so it goes, in the land of traditional biomedical research.
And then came along the de-bi project.
Predicated upon the fundamental principle of decentralization, the de-bi project upends traditional notions about what is essential to the pursuit of ethical scientific discovery. Historically, prevailing trends in biomedical research have relied upon an ideology emphasizing separation, disconnection, and proprietary rights and knowledge. Etiquettes of dis-memberment and exclusivity have carried the day. Conversely, the de-bi project recovers that original, essential, connection between the donor and the benefits accrued to science (and, potentially, the very person of the donor) by their donation. Far from anything covetous or acquisitive, an inherent ownership is re-established (re-membered?) and maintained by use of this paradigm. And, brilliantly, the same decentralization that anonymizes the donor also provides for the restoration and sustenance of the connection between the donor and the tissue sample.
In my daily work life, I seek to uphold feminist principles such as collaboration, inclusiveness, and transparency. I take seriously my responsibility to rigorously, robustly, and relentlessly challenge authority (be that my own situational authority or that of others). Most fundamentally, I strive for the quintessential preservation of human integrity in all of its expressions. Cancer might have compromised my sense of bodily integrity by some specific measure. But the de-bi project, by way of its iconoclastic use of technology, advances new pathways for situating ethical modes of research. By doing so, de-bi has radically restored ownership of my tissue to me. One might say that de-bi has provided for the re-membering of my bodily integrity, and that of thousands of other donors. From radical mastectomy to radical restoration.
What could be more feminist than that?
Apr 4, 2023