I’m starting an experiment of unknown duration and outcome. I’m a mid-career American literature professor who has decided to learn science. More specifically, I’m taking the prerequisites for a Masters’ program in genetic counseling, which I hope to complete at some undetermined time in the future. I’ll use this series to tell my story.
My reasons are both personal and intellectual. On the intellectual front, I think exposing myself to new knowledge and methods will make me a better teacher and writer, and allow me to contribute more to my university community. Lately, I’ve been assigned to interdisciplinary committees and projects where I come up against my ignorance about science. Because I’m interested in questions about genetics, disability, and culture, I’m the lone humanist participating in my university’s groundbreaking Precision Medicine and Society Initiative. [If you’re like I was when I was assigned to this committee, you have only the faintest idea what Precision Medicine is, it’s an approach to disease treatment and prevention tailored to an individual’s genetic makeup, as well as other variables like environment and physiology.]
When I was asked to give feedback about the new program in genetic counseling slated to open at our medical school, I felt capable of assessing its social and ethical agendas, but I knew next to nothing about the science, the major focus of the program. I imagined how much I could learn from taking the program myself. Then I looked at the long list of prerequisites and realized I had never taken a college-level science course. Here was a perfect opportunity to expand my knowledge and training.
I see this as a feminist project. I went to school in the days before girls were encouraged to specialize in science. I liked biology and oceanography (where, long before the coloring book craze, the majority of assignments involved coloring in pictures of sea life), but I was lost by the time we got to chemistry. I remember the high school chemistry teacher as a slight man who looked like Ned Flanders from The Simpsons and made me feel that my failures came from lack of aptitude rather than effort.
As a college English major I tested out of math and filled my science requirement with a class called “Astronomy for Poets.” Now that I’m the parent of school-age boys, I’m gratified to see all sorts of initiatives to get girls interested in STEM, although they are still regrettably underrepresented. My older son’s knowledge of computer programming left me in the dust somewhere during his third grade year. Instead of simply accepting that science and math are unknowable to me, I’ve decided to investigate how they’re being taught and what I’m capable of learning.
I’m taking the first set of biology classes at Barnard College, where the professor is a woman, as are the majority of my fellow students. When I left my first lecture, I was thrilled to join the crush of women moving from class to class. [I also had the less-than-thrilling suspicion that the more advanced biology class across the street at Columbia, the one with a reputation for the Darwinian pruning of whole generations of aspiring pre-meds, was probably dominated by male students].
I also have personal reasons for my experiment. I have a son with Down syndrome who gives me a patient’s perspective on doctors, geneticists, and genetic counselors. Since I published a memoir about his early life, I’ve been invited to talk at medical schools and genetic counseling programs. I’ve gathered some fascinating insights from the doctors and researchers I’ve met during these lectures, but I’ve also become aware that my ability to serve as a disability advocate is limited by my ignorance of the science underlying decisions about care and treatment.
Last summer I used my connections at the medical school to get permission to trail genetic counselors in a clinic at the university hospital. It was a dismaying experience. In addition to disseminating all kinds of limited and prejudicial information about Down syndrome and other genetic conditions, the genetic counselors didn’t seem to know much about genetics. They spent a lot of time on Wikipedia researching their patients’ conditions, and on the phone with insurance companies trying to figure out which services were covered.
Based on this admittedly very partial observation, it strikes me that counselors could benefit from better education about the meaning and consequences of genetic disabilities. It is also a profession in that sorely needs to be diversified. Most genetic counselors are young, white women. Although they do coursework on ethics and cultural diversity, they may have little in common with the patients who need their advice and support.
My day with the genetic counselors gave me first-hand evidence of the mess that is our healthcare system. The time allotted by Medicaid and insurance carriers for a genetic counseling appointment is grossly out of whack with the kinds of complex information now yielded by genetic testing. I was concerned by the genetic counselors’ lowly position in the clinic’s institutional hierarchy, where I saw them treated condescendingly by geneticists and other doctors and lacking support staff to help them deal with paperwork, phone calls, and other bureaucratic hurdles to getting patients the care they need.
I’m also worried by the creeping commercialization of genetic data. In the ten years since I was last pregnant, big pharma has realized that genetic testing is a profitable business. Instead of getting a break at lunch time, the genetic counselors crowded into an exam room where a sales rep pitched them on the services of her lab, leaving them with lots of glossy pamphlets, handouts and samples. Companies like 23&Me and Ancestry are offering direct-to-consumer genetic testing without including a healthcare provider. Right now, the FDA has restricted most of these companies to providing exclusively ancestral information, but they are already authorized to provide some medical data.
These conclusions are based on a few hours’ observation. I came to the visit informed by my experience as a disability advocate, but not someone qualified to comment in any meaningful way on the counselors’ knowledge of genetics, hospital hierarchies and procedures, or the quality of their training. Only by getting inside can I really understand those dynamics. I’ve decided I want to understand the science, as well as the social dimensions of their training.
Will my experiment be successful? I’m not sure.
Already, I’m daunted by the amount of memorization required of this biology course. Will my middle-aged brain be up to the task of learning the parts of a cell, the dynamics of photosynthesis, and the chemistry of carbohydrates, lipids and proteins? I’m intrigued but put off by the electronic textbook, where a little person (a politically correct woman of color) pops up with a dialogue box if I read too slowly or fail to do the practice quizzes.
I have faculty meetings on half the days of my scheduled lab, meaning that I’ve already broken the rule that students can to do a makeup only twice in a semester. In addition to learning biology, I have my own classes to teach, letters of recommendation and tenure evaluations to write, and dissertations to supervise. Looking around the room, I realize its possible I’m the only parent in the class. While other students are forming study groups, staying late at the library, and completing the online practice, I’ll be going to Little League games, orthodontist appointments, and parent-teacher conferences. I see my experiment as a way of staying intellectually youthful, but I wonder if, surrounded by distractions, I will be as able to absorb and retain information as I was in college?
I come to this class dragged down by the baggage of being the girl who failed at STEM. I wonder whether I wasn’t properly encouraged, or if my temperament and abilities are fundamentally unsuited to learning science, as the disapproving body language of my dweeby chemistry teacher always seemed to convey? If the latter is true, and I turn out to be a mediocre student at best, will the overachiever in me want to carry on even as Bs and Cs pile up on my transcript?
Only time will tell. I’m thinking about writing about my experiment and sharing it publicly as an insurance policy against a future self that might just want to slink away when things get hard. As a writer, I’m motivated by knowing my work is being read. If you’ve made it this far, Reader, I thank you for being a part of my experiment.