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23andMe’s National DNA Day Garage Sale

Yesterday was National DNA Day. In addition, 23andMe decided to hold a massive sale on their “complete” scan for $99.

That in and of itself is not so exciting to me. What is, however, is the ensuing commentary that I found on SlickDeals. It is rare you see such a massive discussion with hundreds of contributors from the general public commenting about the risks/benefits/limitations of 23andMe in such a public forum.

Of course there’s the general trolling “I got my results back last week, I’m half German shepherd! Thanks, 23andme!”, and the people who are just excited by the price “OMG! This is a really hot hot deal!”.

But then you get some deep discussion about the value of the information, such as this snippet from poster travfar:

“The poster’s comment was that a false positive/negative would make someone worry about something needlessly for the rest of their lives. Telling people that smoking will give them lung cancer is the same thing. The message that goes out is that if you smoke, you’ll get lung cancer. But the reality is that if you smoke, there’s an 80% chance you won’t get lung cancer. Life causes lung cancer. It happens to nonsmokers as well.”

Go take a look, mine through the pages. This would contribute amazingly to someone interested in looking at public perceptions of DTC, in a format that is free from study bias.

via SlickDeals: http://slickdeals.net/permadeal/33332/complete-edition-dna-testing-kit

UPDATE:

Gizmodo has some interesting commentary too!

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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.

Categories: commentary, people, research

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.

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.

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…)