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Posts Tagged ‘thoughts’

awkward conversations in clinic

November 22, 2009 1 comment

so sometime in the recent past while taking a family history, my patient reported that her husband’s mother had a hysterectomy as a result of uterine prolapse. the husband then covered his ears and didn’t want to hear it, and reported that he didn’t know of this history, mostly jokingly.

i felt obligated to at least explain what his wife meant by “it was hanging low” to him. was that out of line? i’m not sure, but i had accidentally misinterpreted the writing on the family history form for another family member of “MVP – mitral valve prolapse” and “uterine fibroids” to mean all three of: MVP, uterine prolapse, and fibroids, and the clarification was what a conversation the three of us had earlier in her family history, which was why the idea of prolapse was brought up to begin with when we had moved on to his family history

medical histories and family histories are so revealing and often graphic to other family members in the room. I try and gauge what people say that makes others uncomfortable, but on the other hand, i tend to be a very matter-of-fact, this is what it is, it’s your family history take on it too. especially since we assume consent of the information if the patient brought that person into the room.

but it’s especially complicated because these are medical history information facts that my patient’s husband’s mother provided to my patient, and the husband perhaps slightly more oblivious to the details, didn’t want to hear. it’s just another gross female thing guys don’t want to hear about, right?

well, the damage is done i guess.

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finding the guys in genetic counseling, part 2

November 18, 2009 Leave a comment

As I’ve mentioned multiple times, voices from males in the genetic counseling field are few and far between. The following study from the Minnesota training program perhaps sheds a little light on the issue, although know the caveat that the conclusions and comments stem from only a sample of 3 male students.

From the following 2007 article, Schoonveld KC, Veach PM, LeRoy BS. What is it like to be in the minority? Ethnic and gender diversity in the genetic counseling profession. J Genet Couns. 2007 Feb;16(1):53-69., a few quotes from the 3 man-students that were interviewed:

“It’s like I’m an outsider. There’s this small group of us, and I’m always the one to be singled out or excluded …”

“I do feel that I was given the opportunity to interview at more schools because I am male”

“Patients always seem to think that I’m the doctor. It’s frustrating to get the question of ‘Why didn’t you go to medical school?’ from my patients! Like I couldn’t cut it, or like genetic counseling is somehow less of a field”

“A lot of the girls [sic] see things as since I’m a guy I was let in. So they set lower expectations for me and don’t expect me to do well”

“The people who interviewed me seemed to indicate that gender might be an obstacle. I almost felt like they were trying to deter me from the field”

“There are certain preconceived notions like, “He’s a guy, he’ll need more help with the feeling stuff.” Professors/supervisors seem to expect that I’ll know more of the medical/hard science stuff. Some of the professors or the male MDs still ask why I don’t go to medical school”

“It is really helpful to have him [my roommate, who is not in the program] around to sometimes just do guy things. It’s nice to talk about concrete things versus how I feel about things. He maintains my masculine sanity”

“I feel that I might be able to understand what the father is going through better than some females would …”

In comparing the experiences of males to those of other “minority” or self-identified “underrepresented” identity groups in the field of genetic counseling, the authors discuss:

Since the males had spent most of their lives in the majority vis-a-vis their gender, their more recent minority status as graduate students might be more distressing than for the female student participants who have a history of being in the minority because of their ethnicity.

In the present study, male participants appeared to be most adversely affected by their peer relationships. One male participant stated: “[my classmates] don’t even attempt to allow me to be a part of the group, but rather assume that we are so different it is not worth it.” It is unclear if a similar disparity exists among practicing genetic counselors, as all of the male participants in this study were students. Some participants sought out organizations or environments where they were guaranteed to interact with others from a similar ethnic/cultural group, especially the males, who expressed a need to do masculine things.

These above two comments are contrasted to the authors’ initial hypothesis:

1) Individuals identifying with an underrepresented racial/ethnic group would have more negative experiences within the field than would male participants

It definitely provides an interesting view of the experience of males, individuals of underrepresented racial/ethnic groups, and the potentially expanded implications on men who are of an underrepresented racial/ethnic group.

On another note, how about the actual practice between males and females? Heh. Good luck finding literature there. I did find the following article from 1984 (!!!!): Zare N, Sorenson JR, Heeren T. Sex of provider as a variable in effective genetic counseling. Soc Sci Med. 1984;19(7):671-5. Here are their conclusions from the study, taken with a few grains of salt, given that these ‘genetic providers’ were majority of an M.D. training background…

So.. “statistically significant” differences between many genetic-medical issues, but.. wait, no difference between socio-medical issues? Wait, let’s look at those numbers.. they’re all really low anyway so how useful is that information?

What’s interesting about the above data is “relationship with other children” under soci-medical. a difference of 25 to 5.9 isn’t statistically different? Again, low numbers.. I suppose?

What I’d be most worried about are the more counseling-aspects especially “raising a child with a birth defect”, “helped with most personal concerns” … but instead those were not statistically significant. What the authors claim was statistically significant (with a p-value of 0.06? no, that isn’t..) is “failed to ask about all concerns” with males faring worse.

The authors final conclusion:

Available data suggest that women patients seen by male providers. in genetic counseling at least, are likely to receive neither as exhaustive a discussion of selected basic medical and genetic topics, nor as much discussion of the specific topics they came to counseling to discuss. as do women patients seen by female patients.

Frankly, that’s a bit ridiculous based off of this data. Really? Gonna make those arguments based on a comparison of 8.6% to 17.6%. Oh, right, they’re MDs and not genetic counselors. And.. the study is 25 years old.

check-in: NSGC Atlanta 2009

November 16, 2009 Leave a comment

just returned from the NSGC Annual Education Conference in Atlanta, Georgia. was able to meet a lot of new people, hear from a lot of new people, and take in all that is the annual conference.

i have to say the best part of the conference was seeing so many of the people i’ve worked with in the past, old classmates, and all these awesome genetic counselors and speakers that i’ve heard about over the past few years in one place. slyly peering at nametags and then once i figure out they’re someone important, whispering to classmates and friends to point out the awesome gc that just ignored me by texting on their iphone… guess they’re “real” people too, right?

catching up and networking aside, it helps to see what the current interests of others in the genetic counseling field as it currently stands (well, perhaps a few months behind the times given that submissions for abstracts, speakers, sessions are done in advance). attended the pre-conference symposium on counseling for genomic medicine. what was perhaps the most interesting was hearing about current models of practice and research experiences coming from Navigenics, Coriell Institute, Duke, and the Cleveland Clinic.

other interesting sessions included longer talks about addressing the need for genetic counselor involvement in training primary care providers (specifically PAs and NPs), and learning techniques to implement effective strategies to do those (basically, cut to the chase and give them just the information they need, when they need it).

another session spoke of developing genetic awareness campaigns and the different avenues genetic counselors can integrate into creating a media-based campaign to increase the general public’s knowledge of genetics, genetic counseling, or genetics services.

smaller meetings and talks were just as useful. attending the special interest group meetings really showed me how a lot of awesome projects happen on the SIG level, and that there are tons of opportunities to be a part of NSGC and those projects, on a volunteer level.

it’s really amazing how much involvement some individuals have in this organization, and the great things that come out of it.

it was nice seeing students/recent grads from different programs, too, that i’ve heard about, communicated with while writing my Perspectives article, and through fellow classmates and friends.

Atlanta was a blast as well. got to hit up some southern home cooking at The Colonnade, get some gourmet burgers and liquid nitrogen milkshakes from Flip Burger Boutique, and explore some fun neighborhoods and bars around the city, all thanks to my former classmate’s Zipcar membership.

all-in-all, it was a great time. learn lots, meet a lot of people, eat well, and play hard. it’s all in a long-weekend’s work 🙂 oh, and got some networking in there to boot and am now rethinking/reanalyzing my interests for my future career.

let’s just say i’m very intrigued by the intermingling of common complex disease, tons of need for genetics health education that incorporates the skills i’ve learned from school of public health, and one-on-one counseling that incorporates face-to-face as well as technology in the ways it should be better utilized.

more on gender and genetic counseling

continuing the discourse on the idea of “male-ness” in genetic counseling, i find myself shocked, surprised, i don’t know. i’m not sure. read this, from Rayna Rapp in Testing Women, Testing the Fetus, 1999:

Men are scarce in the world of genetic counseling: About 5 percent of the graduates of genetic counseling programs are men, and many of those are employed in administration. As the female director of counseling services in one program put it, “men just use genetic counseling to jump into administration. If a man got hired here, he’d want my job.” Several seasoned counselors expressed great ambivalence about the capacities and limits of men in the profession. “Men aren’t sensitive to counseling issues, to the anxiety of pregnancy,” one said. “science, that’s just information; the skilled part of this job is in the female psyche. Oh, it might work here at Middle Hospital , they’re [hospital staff] well organized. But imagine him at City, where we work in an examining room, and women run around half-dressed. What would we do with a man?” Despite their consciousness of male-dominating biases affecting their own professional standing and pay, counselors are hardly immune to gender stereotypes. But the questions this counselor is raising – whether men are by nature or training less empathic than women, whether identification with similar bodies is necessary to provide the best pregnancy counseling; in other words, “Why can’t a man be more like a woman” – reverberate inside all counseling skills.

finally a frank discussion of what’s usually (in 2009) spoken in-between the lines of “I don’t know any males that are currently counseling; the ones I do know are no longer doing clinical work”, or “Most male genetic counselors tend to work in Cancer Genetics.”

why is it that there’s an opinion that men are not well suited for counseling, and on top of that, reproductive genetic counseling? why is it that these stereotypes stand, possible even today, 10 years later, so readily expressed in supposedly objective situations as what a man would do in an examining room with women half-dressed. is that not what obstetricians, gynecologists, breast oncologists and surgeons do, where the opposing criticism in those fields that were once dominated by white, affluent, males, not necessarily about appropriateness of their presence but rather gender equality?

i can see the criticism, and understandably, perhaps historically the roles of males in the field of genetic counseling are accurately reflected in such statements. however, who is it to say that it’s the male’s intentions, lack of empathic skills, and general unsuitedness to reproductive genetic counseling that pushes him to administration? is it not the influence of the higher hospital administration that allows him to be there, allows him to be chosen, and if offered, the influence of social & financial factors that would incline anyone (male or female) to refuse a promotion? are these statements not the singular opinions of one person (let’s even ignore gender here), who has both an interest in preservation of professional status and role, and perhaps an established bias (that extends to stereotype) against a particular and potential rival group to her/his position?

there are obviously many factors that influence the counselor-client relationship, and even more influences that may exacerbate miscommunication or mis-foster the counseling environment. but to pin a certain gender as universally less capable… i am unfortunately not trained to appropriately evaluate.

Rayna Rapp (so glad i picked up her work) continues:

But the vast literature on communication between counselors and clients suggests profound chasms separating their various agendas and accomplishments that are not dependent on the sex of the service provider.

sure, i’m making assumptions based on a single quotation, of an anonymous source, indirectly through the lens of the author. but it exists! it’s been spoken! it’s been published! i can’t help but wonder what my future supervisors,, colleagues, and those who interview me will think when i express my interest in reproductive genetics. will i receive the same questions, the same assumptions, the same stereotypes as those that may or may not have been pinned when i chose to apply to genetic counseling programs? i wonder.

certainly this is why research exploring the cultural and familial contexts of reproductive genetic counseling is of utmost importance. (shameless plug and ego-boost for my personal research interests…)

analogies for genetics

i always get excited when i hear exciting analogies about genetics. they make explaining genetics in counseling sessions (or in other settings) so much easier.  yeah, sure, there’s the ones i’m familiar with:

genes are like a recipe
chromosomes are like a library with the books as genes
autosomal recessive is like two lightbulbs in a hallway
dominant is like two wheels on a bike
translocations are like switching caps on pens

(credits to my instructors and classmates)

but hearing new and exciting ones about commonly discussed topics make my stomach flutter, such as the following quote from Kelly Ormond in a recent ACP Internist blog post by Jessica Berthold about “A brave new world of consumer gene tests” (link below):

Unlike conditions such as Huntington’s Disease, which a person will definitely get if she has a simple genetic mutation and lives long enough, complex conditions like heart disease are usually affected by many genes. And some are more important than others, said Kelly Ormond, program director for Stanford University’s Master’s Program in Human Genetics and Genetic Counseling, and a consultant for consumer genetic testing company Navigenics.

“For common medical conditions, I imagine genes as rocks in a glass. Some are really big rocks, and some are really little. And if you get to a certain point, that glass is going to fill up and push you over the threshold for the condition. Maybe you have two big genes that bring you to the threshold; maybe it’s 10 smaller ones,” Ms. Ormond said. “And maybe it also takes environmental impacts on top of those genes to cause you to develop a condition.”

rocks in a glass huh. simple and elegant, something easily visually imaginable, or for those who just like the visual part, easily recreated in a genetic counseling session..

original article:

http://www.acpinternist.org/archives/2009/07/genetic.htm

via:

@genomicslawyer

following 23andme on twitter is depressing..

as a future clinician, tweets like this creep me out:

by @taohansen:
My 23andMe results are in: the worst thing I have to worry about is my 61% chance of Venuos Thromboembolism.

so is that.. a risk for superficial venous thromoboembolism? or risk for a deep venous thromboembolism (DVT)? or even a pulmonary embolism (PE)? of which the latter two are, i’d say, pretty serious…

its especially weird especially when the response by @23andme is:

@taohansen Did you find anything else of interest in addition to the Venous Thromoembolism in your #23andme results?

meh. who am i to judge… lowly genetic counseling student.

respect to the MoD

i’ve always really respected the work that March of Dimes does and look up to their organization – both in terms of what they provide patients and providers in terms of information and resources, but also the position they hold in promoting ethically conscious decision making to prospective, expecting or new parents. just a few weeks ago, during a branch meeting, i showed a short, 5-min video by MoD that’s meant to introduce parents to newborn screening for a materials evaluation. needless to say, everyone had great things to say about the video and the many different places in which this simple video could be used effectively.

however, what’s more exciting is recent news of the MOD warning consumers about the risks of DTC Genetic testing and they’ve recently put up a new page on their website:  At-Home Genetic Tests: What You Should Know. absolutely a breath of fresh air coming from those wonderful people over in New York:

When it comes to your health and your baby’s health, your health care provider is the best person to help you decide what genetic test, if any, is right for you and your baby.

not to be rude or anything, but damn right! honestly, i am so pleased to finally see such a large and respected organization put the facts out there, in as simple a way as possible, in a manner that is beneficial for consumers/parents/patients, non-genetics professionals, and even genetics professionals who may be less familiar with the DTC trends going on currently.

a news desk article on their website continues:

Women are particularly vulnerable during pregnancy to sales pitches that play on a new mom’s fear and guilt.  Companies that offer the tests say they can predict a baby’s future height or athletic ability, or can assess the future risk of cancer, diabetes, Parkinson disease, or obesity.  The March of Dimes believes consumers should be very cautious before spending the money — and risking their privacy — on such tests.

once again, just making the same warning everyone else has been, but it’s nice hearing it from march of dimes. oooh i really do heart them. and their nifty booklets/paphlets/cheat-sheets they put out for providers that have all newborn or carrier screening info you’d ever want.

read more about it:

http://news.prnewswire.com/ViewContent.aspx?ACCT=109&STORY=/www/story/07-08-2009/0005056605&EDATE=

via

http://www.genomeweb.com/blog/blasting-dtc-genetic-dx-shops-march-dimes-statement-may-drive-more-people-use-cl