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engaging populations with community-based participatory methodology

March 25, 2010 1 comment

reporting in from the ACMG educational conference here in albuquerque, new mexico, i am particularly impressed by the conference organizers in bringing in a lot of local flavor into the meeting, and raising some important cultural issues and HBHE/public-health methodology! in particular, two entire sessions devoted to issues surrounding genetics research, engaging subject populations, provision of services, and perspectives of native americans.

in particular there was a session focused on native american perspectives of genetics and genetic research. of note, we heard from Johnson Dennison, a “medicine man” with the indian health services describe the side-by-side nature of traditional and western thoughts of care, and from two parents of children with disabilities/genetic conditions, speaking on behalf of their experiences as parents and advocates finding information about conditions and trying to bring together their separate beliefs of traditional healing and western medicine – something i’ve often though about personally with alternative/eastern medicine.

a separate session focused on Navajos and genetic disease. what particularly struck me was a talk by Murray Brilliant from the Marshfield Clinic, speaking about ways in which his group has been able to engage Navajos in genetics education to provide open forum for discussion of genetics and issues surrounding research.

of particular note was his experiences of being effective at engaging the Navajo peoples and getting their input and investment into the research. historically, incidences of studying diabetes in the Hopi and having zero benefit to the study population, or inappropriately using DNA from the Havasupai people, have created alarm in individuals when approached to be subjects of genetics research.

an interesting point is the Navajo Nation moratorium on genetic research that has existed since 2002, which i don’t plan on commenting on here, but is an important point of consideration for approaching local attitudes

Mr. Brilliant’s ultimate point was engaging the communities, finding community leaders and stakeholders to invest in the genetics education, creating true partnerships rather than only creating rewards for researchers, collaboratively planning, and ultimately, listening to the study populations.

this sounds a whole lot like CBPR (community-based participatory research) methods that i’ve heard so much about from my health behavior/health education training. in fact – this could truly be something that has yet to be thoroughly explored – using CBPR methods to garner trust and benefit the subject populations of genetic research.

in the past, perhaps identification of novel disease genes could have been seen as a “benefit” to populations. even learning more about ancestry in our american-minded culture is like a benefit. but one point that Mr. Brilliant made was with the Havasupai – whose cultural beliefs assert that they arose from the grand canyon area, when ancestry genetic studies report an asian origin. granted those ancestry studies were likely performed without direct consent for those studies, who are researchers really to publish/benefit from these studies when they may be in stark contrast from the interests of the subject population?

thus, engaging subject populations in manners that are respectful of their desires and needs may be the best way to address genetic studies.

what about genetic counseling research, or in clinical settings? perhaps many similar efforts could be used as well, even in acute settings. a poignant comment that one of the parent advocates that spoke about her perspective with a family with multiple disabilities and conditions, a genetic counselor’s enthusiasm to draw blood for clinical testing – may come as a shock to people that view their blood, their genetic information, their human blueprint as something they own and don’t want to give up. so even when pursuing genetic testing, exploring that option with clients, it would be very important to be clear what exactly the benefits are with the client, and to assess whether or not those benefits are perceived as benefits.

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Categories: commentary, people, research

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having IRB approval and funding is exhilarating.. until you find out how much more work you have ahead of ya…

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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 Read more…

SEQureDX troubles?

Oops.. I was so excited for SEQureDX too, I was really hoping it would have some clinical utility. Considering I’ll be premising my research on the idea of noninvasive prenatal diagnostics. Hopefully the kinks can get worked out, but nevertheless, it really is just a screen, right?

http://scienceblogs.com/geneticfuture/2009/04/sequenom_reveals_prenatal_down.php

“For those who have been too distracted by swine flu to notice: shares of the biotech company Sequenom have plummeted by 77% after the company announced that the extremely promising initial results for its SEQureDx Down syndrome test – which is designed to detect Down syndrome fetuses using blood samples from pregnant women – were “questionable” and had been mishandled by employees.”

http://www.genomeweb.com/dxpgx/sequenom-discloses-mishandling-test-data-shares-plummet

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so i learned today that i was included in the graduating class’ picture postcard/brunch invite. they have my name down with (honorary) next to it… the rationale was that there weren’t any pictures without me in it. haha. interesting. i don’t know though, the pic is maybe a little weird cause i’m pretty front and center with a scarf but just a tshirt. weird. everyone and their mother and their father and their extended family will think i’m weird.

on another note, seminar’s over!

presentation of my survey project in the survey class was really great. it was nice finally being able to talk about some concrete things in class for once, and it was certainly encouraging that people found it interesting. here’s an image of what part the final survey looked like (including the language i used to describe DS, PS, and prenatal testing)

aapiquestionnaireclip

on this same topic, had a meeting with my first research mentor (peds MD, interested in screening). and i have to say it was very very very good. she was extremely excited for my work and i think our personalities mesh very well, and she had some amazing ideas, letting me step back from what i was doing and see the bigger picture, and see where the direction i really was trying to get at but couldn’t articulate. i think i may be going much more hypothetical with my research than the direction i’ve been going with the AAPI, but it’ll certainly be an important thing to consider. i meet with another potential mentor tomorrow (OB/GYN with an MPH?, never met her before), but hopefully she’ll get excited too! and then i’ll have a real research project and can finally get my grade for research skills from last winter. ha.

so the big news today is really that i finally finished up the big project for my genetics and health bx/health ed class today! i initially wanted to create a patient brochure/slideshow/video of the intricacies and patient concerns regarding SEQureDX and the level of research and levels of detection that the technology can provide. however, i felt a little left out when i couldn’t go to ACMG this year in tampa to really hear from Sequenom how exactly the technology works…

SO, ever since i had the cultural competence class in my materials/methods class in HBHE, i’ve been wanting to develop a new model/tool/activity for addressing cultural “competence” training that we get as GC students. well, i did it! and i incorporated a lot of the techniques i was learning from the public health end of things, including some very participatory research based techniques, to help address the lack of introspection and personal evaluation that was missing from traditional cultural “competence” trainings. again, really working toward cultural humility rather than competence. well, that assignment got turned in for the class, but i also forwarded it to my materials/methods professor to get her opinions as to its feasibility as well as my program director who knew a bit about it already. really, honestly, two birds with one stone.

so tomorrow, i’ll be finishing up with my group for materials/methods our print education tool that we’ve been developing all semester for Active Minds. we’ll have the final product hopefully finalized (postcards, posters, and bookmarks) to start a print campaign for this nonprofit org. that’s never had a print campaign. it’s really exciting, there’s nearly 200 chapters where thes items will get distributed.

ah! in the final few days!

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a lot has happened in the two months that i’ve abandoned this.

it really is amazing how serendipitously things in life happen. the hawaii internship turned out.. well, it didn’t, but after a lot of negotiating, i am now working with the equivalent group in california (yay for the bay area and home), working with their newborn screening branch. very very health education oriented which is even better for me since throughout this semester, i’ve really managed to focus my public health interests on the topics of both creating educational materials related to genetics and training professionals to increase their familiarity with genetics/cultural issues in the clinical setting that affects genetic counseling/etc. in addition to this internship, which you’ll hear all about throughout the summer if i remember to update, i’ll be rotating in the pediatric (+ metabolic?) genetics clinic here for four weeks at the beginning of august, two weeks of which will be supervised only by the medical geneticists that attend the clinic, since the supervising genetic counselor will be away on vacation. that’ll be an immense amount of responsibility, but everyone believes i can do it so i do too! this route (as compared to hawaii) has really allowed me to gain leverage and dictate exactly what i want out of my summer, which has really turned out in my favor. apparently i suck at phone interviews.

on the topic of my research. the survey class turned out well. i ended up creating my survey project on the topic of asian american women and their cultural influences on prenatal msAFP screening decisions, as specifically related to their attitudes/behavioral beliefs about outcomes from screening and their perceived behavioral control. the questionnaire, while yes, haphazardly put together since there’s not very good research and good survey instruments to use, was an interesting process and the process definitely was what was important for me to understand. i present it to the class tomorrow.

however, having gone through this survey, i’m starting to think i want to take a more qualitative approach to my actual GC research project, and focus on acculturation issues in general on the influence of msAFP screening, not just in asian-americans. having to decide how i was going to get a patient population was really difficult and required a lot of “pretending” on the respondent’s part, which as i’ve been learning, is tough to do because the attitudes are so subjective and dependent upon the situation. also, it’s hard to find a good cohort of age-appropriate female asian-americans here at the university of michigan (only 700 female asian american graduate students are here, which is limiting in and of itself, since a lot of them have very very specific backgrounds). i meet with several of my potential research mentors this week and next.

the MI class was great, ended today, and learned a lot of skills and really can see its applicability to genetic counseling. my final presentation can be glimpsed at below. the discrete skills will really be useful in my clinical work later on.

finally turned in the program proposal for the food desert issue in highland park as well. let’s just say that was painful and unnecessarily misguided.

which leaves me to my final major task for the semester: finishing up the mtDNA student seminar that was supposed to be presented in february but never managed to make it to completeion….

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February 2, 2009 1 comment

i think i’ll start a new series of posts that i can use to keep myself on track and get a good idea of what’s happening in my training/coursework/projects/research/internship search and get my thoughts together regarding what needs to be done next.

courses

motivational interviewing today was great. we’re learning techniques of reflective listening, and attempting to be able to reflect complex thoughts, feelings, and issues back to our clients/patients by really getting them to explore. instead of just doing a “content reflection” as it’s called, we basically move the mirror to different Read more…