Care Choreographies and the Making of the Psychosocial in Genetic Counseling

Explain your research project

Since the dawn of the Human Genome Project, genetic counselors have occupied a privileged
space at the National Institutes of Health: consenting patient-participants into clinical trials,
carrying out roles ranging from shuttling samples to running clinical trials, and holding space for
entries into experimental medicine when FDA-approved therapies are no longer possible. As
clinicians at “America’s research hospital,” not beholden to insurance negotiations, genetic
counselors are also uniquely given the invitation to embrace psychotherapeutic practice and
negotiate its meaning in the clinic. Through ethnographic fieldwork with genetic counselors and
the families they work with, this project explores how the social and emotional dimensions of
care are choreographed at the cutting edge of precision medicine.

How did you come to this work?

This work emerged from several years of fieldwork in oncology and genetics settings, which was
inspired by my own background as a BRCA1 carrier with cancer in the family. Early in my
fieldwork, I decided to train as a genetic counselor; while in training, I developed an interest in
specific questions around the meaning of accompaniment in genetic counseling: How are
counselors’ roles defined within care choreographies and pursuits of clinical recognition? How
does the knowledge of the psychosocial aspects of genomic medicine emerge through the
rhythms of daily care work? And how do counselors negotiate the meaning of care, individually
and collectively, in practice? After graduating as a genetic counselor, I was excited to further
explore these questions in the field at the NIH and NCI.

What resonated with you as you conducted your research? What were you most
excited or surprised to find out?

Genetic counselors at the NIH practice a kind of ‘bridging work’ as care workers, negotiating the
meaning of their roles between providers, researchers, patients, the state, and their own
orientations to care. For some, accompaniment is a science; for others, an art: dropping into an
encounter and, with an open frame, responding to the needs of the person in front of them. As
patients navigate junctures in oncology and genomic medicine, counselors hold space for hope,
grief, and uncertainty in the crosshairs of risk and an often limited or unknown prognosis. As I
observed care work and unpacked its meaning with interlocutors, I began to parse the origins and
multivalent forms of counseling in contemporary genetic counseling practice. While health
behavior and decision-making literature characterizes risk and emotion as bound to the
individual—the patient—I found that the work of holding space for precarious junctures in
oncology and medical genetics is both relational and dynamic. Meanwhile, in the course of summer fieldwork, I saw transformations in the field begin to take
place. From budget cuts to austerity measures, and from the proliferation of generative AI to
training program closures, I witnessed the emergence of a newfound precarity in genetic
counseling. Suddenly, people were struggling to keep and find jobs. As a psycho-oncologist
shared about the cancer research space, “the Moonshot went up, and now it’s crashing back
down.” Now I was processing these changes with interlocutors, who were also my friends and
mentors. How to make sense of present shifts in the field and the pressures they exert on how
care takes shape, both at NIH and more broadly? I still am not sure—but I’m staying tuned.

Do you plan on continuing this work, or is this part of a larger project? If so, please
explain.

This summer fieldwork was carried out in the context of my broader dissertation research on
cancer care and genomic medicine, which I have been attending to since 2018. In addition to
participant-observation and interviews at the NIH, I have pursued ethnographic research at
‘expert’ research symposia and patient advocacy groups. I have also conducted interviews with
fellow patients living with hereditary cancer risk, in particular working with a group of LGBTQ+
community members to explore the intersection of gender expression and cancer risk. This work
was recently published in the Journal of Genetic Counseling and discussed on DNA Dialogues.
I’m currently wrapping up dissertation fieldwork, and I will be writing up as a Dean’s Teaching
Fellow in the spring semester.