Takeaway
Clinicians can empower patients through transparency, involvement, and ownership in the research process. This can foster a deeper connection with scientific discovery, enhance dignity, and advance health outcomes for all.
Passion in the Medical Profession | August 19, 2024 | 3 min read
By Marielle Gross, MD, MBE, affiliate professor at Johns Hopkins Berman Institute of Bioethics
“There’s your fallopian tubes in Boston, with my handwriting on them,” the doctor announced victoriously, explaining the image displayed on her patient’s screen share. Just like you can track a package, decentralized biobanking, “de-bi” for short, allows patients to track the tissues they donate for research. The patient was able to follow the journey of her fallopian tubes as they made their way from their origins in her pelvis, into the hands of her surgeon in the Hopkins operating room, before embarking on a cross-country mission to the MIT scientists’ bench. Unlike most packages, this was a deeply personal delivery, critical anatomy that had brought her the joy of her five children. Yet, because we now know that most deadly ovarian cancers start in the fallopian tube, many women choose removal rather than “tying” their tubes once they have completed childbearing.
“This is a part of my body that is no longer in my body, and I think those things are important to honor,” the patient said. A Marie-Kondo moment ensued as she expressed gratitude to her tubes for their service and found comfort in letting them go.
As a Hopkins-trained physician, I’m honored to follow in the tradition of Sir William Osler, recognizing the patient’s voice as a source of ground truth, their humanity as our raison d’etre. For my part, I’m committed to building software that reinforces relational ethics as the atomic unit of value in our ever-expanding healthcare systems.
“See, and then reason and compare and control, but see first.”—Sir William Osler
“That one looks like a mermaid!” She exclaimed, scrolling back and forth between left and right specimens, “Like brows and boobs, your tubes don’t look like twins!” While she was marveling at their appearance, we showcased visual evidence of how her tissues were handled with care, highlighting the attention to detail, effortful processing, and hand-embroidered treatment of her donated tissue as a sacred research object. Her tubes were metaphorical movie stars, ready for their “close up” with renowned scientists.
Seeing was believing. Her salpingectomy’s dual benefits of contraception and cancer prevention were deepened by a newfound source of higher purpose at the frontlines of translational research. “I feel good about closing this chapter,” she said, inspired by the knowledge that her tubes were going on to advance the future of women’s health.
“The good scientist studies the disease; the great scientist studies the patient who has the disease.”—Sir William Osler
Importantly, the patient was empowered as a colleague, a citizen scientist with a seat at the table. “Now, what else can we do?” She added, excited to contribute more time and effort to the project’s cause. At that moment, it was one small step of reconnecting a patient to their donated human tissues, but one giant leap for human-subject-kind.
“To study the phenomena of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all.”—Sir William Osler
Next, she visited de-bi’s virtual lab, where she was able to learn details of the study’s progress and send questions or encouragement to the research team. With a digital bridge between bench and bedside, we witnessed a humanizing transformation, bringing the warmth of interpersonal interaction to an artificially sterilized research mentality. Beyond closing a gap in patient experience, our approach benefits scientists by overcoming a paradigm of alienation from clinical context.
Research is a voyage that patients, surgeons, and scientists take together. Until now, we’d been missing the sea-worthy vessel capable of carrying us safely towards the horizon. Today, the de-bi pilot is underway, demonstrating the potential for decentralized biobanking to upgrade bioethics for the era of mobile computing. The session concluded with a plan to meet again soon to continue our collaboration, a reminder that science, like medicine, is both an art and a calling.
Donating biospecimens turns the very substance of affliction into a tool for healing. Being part of something bigger than ourselves is among the greatest privileges afforded patients and physicians alike. Flesh, blood, and time are the most precious, nonfungible assets. When considering whether to join a study, we should advise patients as prospective collaborators, asking them to invest in science that is impactful, inspiring, and framed by relationships of respect, reciprocity, and trust.
The author founded de-bi, co. to help make decentralized biobanking widely available to patients and the translational research community.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.