my research is taking the unfortunate turn away from an asian-american focus and looking more broadly at racially/ethnically diverse populations. okay, maybe that’s not unfortunate, but not what i’d initially envisioned at least. most importantly, i’m trying to decipher what the cultural and personal values are that influence the racial/ethnic disparities that we see in prenatal screening and testing uptake. but in designing this study, it really looks more at more broadly, what these values are, and how they influence a woman’s perceived severity of prenatal screening outcomes (the conditions that are screened for). rarely have the women themselves been asked “hey, what do you want screened on prenatal screening if it were your decision, how good/bad of an outcome would you consider those things, and would you consider screening or terminating over it?”. that’s the general gist. asking the client/patient themselves, what do they see as valuable information, and would they want to know that information – before the test is actually done. heck, before the test is even created by the labs! maybe with these opinions, we can work towards designing prenatal screens that women actually want and not just what we as medical professionals know is bad and that we can test for, and spend countless billions of hours pouring over the ELSI of things before we ask the end-recipient of the services. however, i’ve so far had an amazing relationship with my primary research mentor and the ideas that she’s had for me and my project have really helped me push the boundaries of what i had envisioned this research being.
also on the topic of my research, i’ve been calling all around trying to find the best place to find a diverse sample of reproductive-aged women to recruit. it’s a little hard finding good research databases. that’s not true. it’s hard finding people that pick up their phones to answer questions about patient research databses.
i also finally spoke with one of the professors at UCSF that i’d set up a meeting with a while back. she does a lot of racial/ethnic disparities research regarding prenatal screening, and it was really helpful. we chatted for about an hour, with a lot of me explaining what i wanted to do and how i envisioned it, and what her opinions were and how well they’d mesh. it turned out well. let’s say it was very reassuring to speak to her, but now i feel like i need to get a good sample to get some legit data out of all this, all the while now starting to worry about logistic regressions and all the biostats that i’ll need to consider just in the design..
on the public health end of things, the internship in california is going well. i’ve spent the past few weeks reviewing, writing, editing, formatting, InDesign-ing, Publisher-ing, printing, sending, and PDF-converting educational materials for the state. my first task that’s out for the second round of review is a tri-fold for parents whose kids get picked up as CF carriers on newbron screening (check out page 3 of this newsletter for the CF screening algorithm in california). other tasks have included reformatting documents, pulling journal articles for teaching programs, watching movies about NBS, performing an in-house needs assessment, and getting just a whole lot of experience about how the california newborn screening program works in general. how the contracts work, where things are sent, who does the ordering and developing of the materials, and the general gist of how things run.
on another note, i took my first family history in cantonese the other day! we had an ama client that came in, and i had the chance to go through the motions of 1st year and take a pedigree, but in cantonese! i spent two nights prior with my mother and her siblings, after dinner, practicing how to say certain expressions, and how to probe, and how to word things so that they don’t sound too harsh. i’m actually a bit surprised how naturally it came out after just two days of practicing. now the next step is doing some real counseling about genetics and procedures… there’s another ama patient scheduled in the coming weeks that i’ll get a chance to practice with.
i’m really yearning to go back to school right now. i miss my classes so much. i miss a variety of projects and events and talks to attend. maybe it’s just cause most of the people i work with are all out of my age range and it’s hard to connect. maybe that’s what i’m missing about school?