I want BRCA1/2 testing available on demand and so does Mary-Claire King

Today NPR ran a segment on Mary-Claire King in which she argues for mass testing for BRCA1/2 in average women, similar to how I argued months ago that BRCA1/2 testing should be available on demand (that post here: I want BRCA1/2 testing available on demand).

But whereas I simply had reason and political rage to drive my argument, King has hardcore science with which to back up her argument. She and her colleagues have now shown that a woman without a history of breast cancer in her family is just as likely to have a BRCA mutation as a woman who does have a history of breast cancer in her family. More importantly, both women–those with and without family histories–have the same risk of developing breast and ovarian cancer. This is groundbreaking and a very good argument for widespread testing. 

The second woman NPR interviewed, Fran Visco of the National Breast Cancer Coalition, seems to think we shouldn’t do mass testing for BRCA1/2 because women might take the drastic action of needlessly having prophylactic surgeries. Really, it just sounded patronizing. NPR paraphrased her thusly: “Just because a woman has one of these mutations doesn’t mean she’ll definitely get cancer.” Really?! Who knew?! Thanks for the tip!

Some people make it sound like BRCA+ women are idiots who learn they have mutations and immediately run to back alley clinics to lop off their breasts with rusty cleavers. Choosing prophylactic mastectomy is a wee bit more complicated than that. And there are other options (as some women I know have chosen and been satisfied with).

I’m pretty embroiled in my corner of the breast cancer community–that is, I read around about breast cancer in general, but most of my time is devoted to the BRCA+ previvor/survivor corner of that community. But I’ve seen argument’s like Visco’s from women with breast cancer fairly often. It seems to pop up in every article on BRCA mutations these days. It makes me wonder if survivors in the larger breast cancer community still harbor skepticism towards prophylactic mastectomy, as was the trend in the 1990s (they rarely mention oophorectomy). Is that why King’s push for mass testing is meeting with skepticism from these quarters? Or is there resentment that previvors have forewarning that survivors didn’t have?

Very rarely do I see these kinds of arguments from BRCA+ women themselves. Even women who choose surveillance over surgery (like Linda Grier over at Elevated Risk) generally don’t disparage other women’s choices to have mastectomies.

(And yes, there are times when I do feel what Linda Grier (who sadly no longer blogs) has called “previvor’s guilt” that it took my aunt’s advanced breast cancer, mastectomy, chemo, radiation, lymphedema, and hard fight for genetic testing for our BRCA mutation to be uncovered. She has said that her cancer is a gift to the younger women in our family and to our female descendents, who now have the choice to take action. It is a gift, as well as a burden. And it isn’t fair to her, or my grandmother, or any other women with breast cancer who didn’t have the choices I have right now.)

I love the idea of mass testing–paired with genetic counseling, of course, and with the option for every woman to make an informed choice about whether or not to undergo testing. Some people just don’t want to know and we should respect those decisions, so long as they are informed decisions. And I love Mary-Claire King, who continues to kick serious ass.

Review: Decoding Annie Parker

I finally saw Decoding Annie Parker and I have to say that my reaction was similar to Bryna’s over at Blogging BRCA. Go read her review here.

I was disappointed in this movie. It focuses mostly on Annie’s life with little attention paid to Mary-Claire King and the science behind the discovery of BRCA1. The film shows Annie learning about genetics, and it would have been easy for viewers to learn about it along with her: all the filmmakers would have to do is show someone explaining it to Annie or have Annie explain it to someone else. We get some of that, but mostly we see Annie bent over big books and constructing genetic models to help herself understand heredity. As viewers we don’t learn much.

There’s also little sense of why the discovery was so scientifically significant. I remember watching the nightly news back in the early 1990s and seeing the excitement around the discovery on television, even though at the time I had absolutely no idea that I was a carrier. It would have been easy to cut in some footage from the time in a montage of sorts, or have Annie watch Tom Brokaw reveal the discovery and explain its importance on the national news.

At the same time that they shortchange viewers on the science behind of BRCA mutations, the filmmakers missed a real opportunity to explore the life of a woman in genetics who triumphs over the misogynist tendencies of the scientific community, something King herself is interested in. King is a truly exceptional woman and groundbreaking scientist not only for her role in the discovery of BRCA1 but also her other work in genetics, yet she’s barely shown despite the fact that the film promos suggest the movie is equally about Parker and King.

Moreover, Annie Parker is a strange figure to focus on in some ways. As played by Samantha Morton, she seems smart, witty, tenacious, and very likable–all good qualities, to be sure. However, in the film, Helen Hunt (playing Mary-Claire King) calls Parker “a remarkable woman.” After watching the movie, it’s not clear to me what makes Parker so special beyond her great personality and unlikely survival after three (!!!) separate cancer diagnoses. Her story is similar to so many BRCA+ women and other cancer families. We see Annie doggedly researching cancer genetics at a time when the medical establishment didn’t recognize it as a viable field of inquiry, but what did her research actually accomplish? Not much.

I’m not saying that the film shouldn’t focus on Annie Parker or that she’s not worthy of our attention. Her story on its own may very well be worth a film. However, this film does a pretty flimsy job of connecting her to the promise of its title–to decode her genes in the discovery of BRCA mutations. In fact, King never decoded Parker’s genome, Parker’s genes were not part of the discovery of BRCA1 at all, and the two never even met; there’s no real tie between them beyond the fact that King located BRCA1 and Parker is a carrier of BRCA1. If you’re not going to focus exclusively on King and want to include a narrative about a woman with a BRCA mutation, then why not use a woman from one of the cancer families that King actually studied?

The filmmakers did invent a scene in which Parker and King meet. In it, Parker rushes in late after King gives a scientific lecture and introduces herself. King brushes her off impatiently and walks away, leaving Parker looking disappointed and awkward. King then returns a moment later and tells Parker that she’s remarkable before walking away quickly again. That’s it.

Quite frankly, King comes off as a bitch in the scene. Here viewers have just watch the funny and tenacious Annie Parker suffer through the deaths of her mother and sister from breast cancer, receive her own diagnoses of breast and then ovarian cancer, endure the truly horrific side effects of chemotherapy, and cast off an immature cheating husband, who then himself develops cancer and dies. And then this fictional King can’t be bothered to even have a polite conversation with her.

This is completely at odds with the reputation of the real Mary-Claire King, who is known for being a friend of the underdog and running a particularly diverse, inclusive lab–a rarity in the sciences, especially in the 1980s and 1990s.  This woman has revolutionized the study of breast and ovarian cancer, and had a palpable effect on the lives of millions of BRCA+ women the world over who now have the chance to avoid the genetic fates suffered by their foremothers. Mary-Claire King is the kind of hero you rarely see–one that actually exists. Yet here she’s depicted as at best aloof, at worst just plain cold. The filmmakers never contacted King when making the movie. I find that very strange considering that they were making a movie about her and she’s always been accessible to the BRCA+ community. Most of all, I find their depiction of her as an icy lady scientist in this fictional scene appalling and terribly cliche.

I see why BRCA+ women have been promoting to this movie. We want a voice in the mainstream. We want some cultural artifact that explains our situation–something that we can point to when explaining things to people and be like “see that? that’s what I have, that’s what my family has been through, this is why I do what do even if it seem extreme to you.” This is one reason why most BRCA+ women were mostly supportive of Angelina Jolie’s NYT op ed. Decoding Annie Parker isn’t a terrible movie, but the filmmakers really missed their chances to make it a great one or at least a good one.

 

Mary-Claire King is a feminist

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I really disliked Kevin Davies’s and Micheal White’s Breakthrough, but on the plus side, it had this choice bit of info: “It is true that [Mary-Claire] King’s unwavering opinions irritate some of the male scientists with whom she comes in contact. She has strong feminist sentiments and, although certainly no man-hater, she can be quite scathing about male behavior. On numerous occasions, she has been critical of the patriarchal aspects of scientific research. Once, in comment on those men critical of her work in breast cancer, she said, ‘My colleagues were very skeptical, and you know how skeptical boys can be. Scorn! Scorn! Scorn!'” (72).

Again, Davies and White present feminism negatively, even when it comes to one of the heroes of the BRCA1 story, Mary-Claire King,  a woman who spent 20 years looking for the genes that cause hereditary breast and ovarian cancer despite the derision of her male colleagues.

I would guess that nearly every woman in a male dominated profession has encountered the kind of “Scorn! Scorn! Scorn!” King describes, but which Davies and White seem to dismiss. In a recent interview, Mary-Claire King has this to say about patriarchal science:

INTERVIEWER: “Is it still hard to be a female scientist? Is there more pressure and competition now?”

MARY-CLAIRE KING: “The social structure of science is now very different than 40 years ago, wonderfully so. But scientific success is still difficult for young women because the years that one must be most productive, in order to establish oneself as an independent investigator, coincide exactly with the years of childbearing. It is a tremendous challenge. It can be done, but it takes a village. We need to maintain constant attention to the personal and institutional and policy details that can keep the chance for scientific life open for young women.”

So I guess that one of the few good take aways from this book is that it confirms something I’ve long suspected: Mary-Claire King is a raging feminist. Rage on, Mary-Claire, rage on.

I leave you with the trailer for the film about King’s persistence in finding BRCA1, Decoding Annie Parker, which you’ll be able to see in wide release next year. Weirdly, in the interview I cited above, King says that the makers of the film didn’t consult her about it. It seems strange and rude to make a film about an accessible living figure without even dropping them an email. Luckily, she liked the movie, but still: not cool, filmmakers, not cool.

Joanna Rudnick’s In the Family

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I finally watched Joanna Rudnick’s documentary about being BRCA+, In the Family (2008). It is, obviously, required viewing for anyone with a BRCA mutation, but it’s hard to watch. I started to cry while the title credits began tracing out the cancers in Rudnick’s family and I didn’t stop until I had watched every bonus feature on the DVD.

The film begins with Rudnick’s horror at the idea of prophylactic surgery. She’s young and single; she wants to keep her breasts and ovaries until she can marry and have kids. As she begins to interview women with breast cancer, families with BRCA mutations, doctors, scientists, and various BRCA advocates, she seems to slowly realize that she ought to have a prophylactic mastectomy and oopherectomy. Still, as the film ends, she drags her feet.

I wanted to know what happened to Rudnick in the five years after the film’s premiere in 2008. After some quick googling, I found that she found a supportive partner, married, and had two daughters. Watching her film, it became clear to me what an important voice she is for the BRCA+ community. In it, Mary-Claire King tells two young women that they each have a BRCA mutation and she repeats several times that everything is going to be okay, that these women will not get breast cancer. Rudnick’s happiness–her supportive partner and chubby cheeked girls–gives me hope that King is indeed correct: that BRCA+ women are not doomed to repeat their foremothers’ experiences. Rudnick, it seems, has beaten the odds and so can we.

So I was disheartened to find that Rudnick was recently diagnosed with breast cancer at the age of 39. On a post over at the PBS blog, she writes: “The worst part about being diagnosed with breast cancer is knowing that I had the knowledge to prevent it.” After treatment, she had a double mastectomy. As she was recovering, Angelina Jolie’s NYT article was published.

In the Family captures the horrors of preventative surgery, but also provides strong arguments for the necessity of it. Rudnick interviews women with breast cancer who swear that if they could go back in time to have the prophylactic mastectomies and oopherectomies that they would in a heartbeat. But Rudnick herself is evidence that hindsight is 20/20: surgery provides the best protection for BRCA+ women, but many women don’t want to do it or can’t bring themselves to pull the trigger. And who can blame them?

I hope Rudnick is doing well. In making her film and speaking out about her experiences, she has done an incredible service for other BRCA+ women. She has sacrificed her own privacy to provide us with a glimpse into the everyday life of a BRCA mutation carrier. I am grateful to her.