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NIH FHx Conference

August 21, 2009 1 comment

I’m leaving today to attend the NIH State-of-the-Science Conference coming up next week. There’s an amazing list of speakers on the agenda (Guttmacher, Khoury, Acheson, Rubinstein, Sharon Terry, Colleen McBride) and in all their short speaking sessions, it’ll be interesting hearing the import of family history in primary care settings.

This’ll be an awesome experience seeing how to best expand and come to consensus on one of the best medical, clinical, genetic, public health tool, really across all disciplines, to assess extent of genetic disease and inheritance. I’m sure many other important people will also be attending.

I’ll be taking notes and reporting back to my program for journal club. Should be exciting, plus I’ll get to see one of my old classmates who’s moved on toward real-life! Let’s hope they have internet so I can update as I go along!

Find more info at:

http://consensus.nih.gov/2009/familyhistory.htm

Supposedly the NSGC president, Steve Keiles, will be live-twittering during the event. Check it out:
http://twitter.com/nsgc_org
via: http://nsgcpresident.blogspot.com/2009/08/nih-consensus-development-program.html

Mr. Gene Sherpa has a few things to sy about this too:
http://thegenesherpa.blogspot.com/2009/08/family-history-state-of-science.html

UPDATE: 8/25/09

Phew, okay, so after a day and a half of nonstop talks and discussions, sounds like there’s a whole lot of ways to look at family history in general practice settings, a whole lot of research that still needs to be done, and not a lot of research that has been done to effectively analyze the procedures, processes, and outcomes of the family history as a tool.

A few key remarks (among my 40 pages of typed notes..) that I thought stood out from the wonderful array of speakers included:

Per Dr. Maren Scheuner:
The Red Flags of Family History include:

  • early age at onset
  • multifocal disease or severe phenotypes
  • 2+ closely related and affected family members
  • 2+ generations with affected family members,
  • disease in the less often affected sex (in the case of heart disease or breast ca.)
  • and patterns suggestive of a known mendelian disorder

These are great and all, but they look awfully similar to the red flags that I talk about in genetic counseling when.. oh, right, evaluating a family history!

There was the idea of stratification of risk into multiple categories of Weak, Moderate, and Strong, that Dr. Scheuner brought up, and then many other speakers touched on. Finding algorithms for determining process outcomes based on each of these family history risk stratification levels seemed a key component of moving family history data into standardized care.

Dr. Paula Yoon made the important point that family history of common conditions, as a tool, performs well for populations, but poorly for the individual. This is, again, not too surprising given the risks we see aren’t quite as black-and-white as we expect, and, to bring it to a counseling standpoint, having disease and not having disease can sometimes be interpreted as very black-and-white to clients, patients.

Dr. Louise Acheson pointed out that good prevention, good surveillance, will over a short period of a few generations, render the family history potentially useless. While it may seem great that families may eventually no longer have manifest disease due to great prevention efforts, the multifactorial elements underlying disease will still be present (especially the genetic components) in future individuals and there’s a need to include biomarkers and disease precursors in the evaluation of family history as these assessments move forward.

Dr. Wendy Rubinstein, on a very very peripheral note, brought up her analysis of the CDC’s Family Healthware experience of using a family history screening tool, and emphasized the need to avoid the word “genetic” in communicating with consumers. I guess subconsciously I’d thought about this and the mental associations/implications with words that we as GCs think are simple, that can occur with any given word. Perhaps this is especially important when trying to create tools that will be applicable and can be related to mixed population groups as a whole.

Dr. Ted Adams talked a bit about the Utah State experience (that’s gone on for decades!) of using high school…. my lunch is here 🙂 more later!

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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…)