Tag Archives: genetic testing

Patents on BRCA genes ruled invalid

The ACLU has won the lawsuit against Myriad Laboratories re: their patenting of human BRCA1 & BRCA2 genes.

“Today’s ruling is a victory for the free flow of ideas in scientific research,” said Chris Hansen, a staff attorney with the ACLU First Amendment Working Group. “The human genome, like the structure of blood, air or water, was discovered, not created. There is an endless amount of information on genes that begs for further discovery, and gene patents put up unacceptable barriers to the free exchange of ideas.”

 If this ruling sticks, what an enormous feminist victory, and a victory of human rights. Coupled with the passage of a health care bill–incredible. Can it be that this country is really making strides to release the slow chokehold of government and corporate control over our bodies–and women’s bodies besides?

For background on this issue, watch the ACLU video against monopolies over human genetic testing here.

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Results are in

& I do NOT have a BRCA mutation.

Which is, yes, good news. Who wants to take me out for a martini? But my sense of emotional relief is tempered by the rational knowledge that this relief is largely artificial and unfounded, since I’ve already had f-ing cancer, and could die from it still.  And there’s no certain explanation for it now; cancer being genetic & all, not having the BRCA mutation likely means there’s some other genetic malfunction in me that hasn’t been discovered (and patented) yet.

I am taking the same course of action in light of these results as I promised myself I would if I tested positive: ie, doing nothing. But do feel blessedly exempt from that pressure of BRCA-scaremongering into preventative surgery.

I really wonder whether there is something defunct with my primal sense of self-preservation. I’d probably feel differently about preventative surgeries if I had children, or a life’s work, or anything else to live for. But I thought about it as I lay in bed this morning, hitting the snooze button over and over, and came to the same old conclusion: how presumptuous it seemed to act as if my life was really all that important–and how pointless it seemed to go through such great pains to prolong it.

Which is why I am dreading my upcoming mammogram, and why I have not called for the results of the CT scan I had six weeks ago. If I have cancer, still or again, I don’t want to know. I don’t want any more treatment. It’s terror and desperation, exhaustion and depression. But I can’t sustain myself on any of that, and I don’t want to.

(I am eligible to be tested for Li-Fraumeni syndrome, but would have to pay $3,000 for the privilege. And really, there’s not much point in knowing anyway, since there’s nothing anyone can do but wait for you to get brain tumors and leukemia and all the rest.)

I’m still obviously at risk for a new breast cancer on the left side, or for a recurrence/metastasis of the primary cancer. But I realized the full implication of the negative test result about twenty miles from the hospital, and burst into tears in the middle of traffic on I-79: as far as I know, I’m at no greater risk for ovarian cancer than the rest of the general population.

And I thought of all the women walking around with their ovaries inside of them, not even thinking about it, certainly not shedding tears of joy on the interstate over it, and felt strange–but strangely elated.  Even if I can never have children, there is something psychologically comforting about keeping those bits where they belong–and not having to defend to the death my decision to do so.

Then on NPR, an interview with Vic Chesnutt, & this rather incredible song:

Vic Chesnutt – Flirted With You All My Life

which he described as a “breakup” with death & the temptation of suicide.

Bizarre how Fate sometimes supplies a soundtrack.

Oh death, oh death
Really, I’m not ready

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Genetic testing in squares, circles, and small unmarked bills

I met with the genetic counselor yesterday–which had me imagining she would sit my DNA down in an upholstered chair, a box of tissues beside it, and try to coax it to talk about its childhood while she sat nodding, notebook on knee.

I mean, just look at this chick’s anemic little gene. She needs to eat some spinach, or something, and punch those carcinogens in the face.

Conjunction junction, what’s yr fun-ction?

Instead she talked about the BRCA mutation and Li-Fraumeni syndrome — which I had never heard of before (I thought she was saying ‘Leefah Ramini syndrome’), and which sucks a big one, holy shit; I kind of wish I didn’t know that things like this exist.

She drew up a chart of my family history, which looks like this, wherein the squares are men, the circles women, the black dots cancer and the X’s deaths. Some from cancer, others from heart disease and suicide and drug overdoses long before cancer could have caught up with them. In short, I don’t know much about my family. I only knew one of my grandparents, and barely; the others didn’t survive out of their forties. My longest-living  relatives were/are in their early 60s.

Also, there are mainly squares in there, so as far as breast and ovarian cancer goes, it’s hard to say.

Still, it’s strange to see people reduced to a geometrical map, crossed out with a callous pencil scratch, black dots like small deaths. I sat thinking of Mendel’s pea plants and the genetic traits surveys we did in eighth grade (when I discovered I have one bent thumb and one straight; even then I knew I was a freak), wondering what genetic death wish sat inside me.

Here’s a big surprise: my ‘insurance’ doesn’t cover the three thousand dollar test.

Three. Thousand. Dollars.

But here’s a big surprise, without a trace of sarcasm: the good people of UPMC are picking up the tab with research grant money. To express my gratitude, I let them take five additional vials of blood and peed in a cup for them.

The results–which have a 7% chance of coming back “indeterminate”–come in three weeks. My blood’s being sent out to Utah as we speak. There is only one lab in the country that performs these tests, she told me, because they have a patent on the genes.

A patent on the genes. BRCAnalysis®.

Yeah, I did a Scooby-Doo double when she said that. Arrrrr?

I’m not the only one who consideres this “illegal and unconstitutional,” as the ACLU has taken them to court over it.

According to the lawsuit, Myriad’s “monopolistic control” over its BRCA genes hampers clinical diagnosis, serves as a disincentive for research, and allows the company to charge upwards of $3,000 for testing that many women cannot afford. As a result of these practices, “patients whose tests come back with inconclusive results do not have the option to seek additional testing elsewhere,” the ACLU charges.

You think?

No matter what the results are, right now they’re solely for my own information. I’m keeping my left breast and my ovaries, and all the other bits, for the time being. Maybe that seems like I don’t set my life at a pin’s fee. Maybe I don’t, really. All I know is, I need to catch my breath.*

*When I first typed that, I wrote, “I need to catch my breast.”

Dear God. Maybe I need the upholstered chair and tissue box after all.

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It’s “Previvors,” preventative mastectomies & a battery of hypotheticals

Jenni Murray recently discussed preventative mastectomy on Woman’s Hour; you can listen here to her interviews with a genetic medicine consultant and a BRCA+ woman who had prophylactic bilateral mastectomies and runs a helpline for hereditary breast cancer. Only 8 1/2 minutes, and well worth it.

I’ve not touched the subject of prophylactic mastectomy/oophorectomy/hysterectomy here yet (and to think that eight months ago I didn’t even know how to spell “mastectomy.” Now I’ve had one. Precocious, non?) — largely because I’m still not entirely sure how I feel yet. Maybe I never will be. Also, I know I have a readership of BRCA+ women who have had preventative surgeries without ever having had cancer, and it’s not my intention to offend by seemingly trivializing what is a serious personal decision. So I can only speak strictly subjectively.

And I will. Continue reading

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