The Ethics of Corporate HBOC and BRCA+ “Advocacy”

I’m feeling pretty pissy today about for-profit genetic corporations trying to co-opt BRCA+ and HBOC advocacy. I had a terrible fucking day full of HBOC-induced suffering. This was one of those days when I just felt cursed by being BRCA+. A day that involved not just one, but two emergency doctor visits, a whole day of sitting in waiting rooms, plenty of being patronized and jerked around, and a minor procedure that left me bleeding, crying, and defeated.

I came home exhausted and desperate to decompress, so I set myself up in my recliner with my comfy blanket, I put on some terrible TV show on Netflix, and I logged on to twitter to catch up on the day’s HBOC tweets. I found the #BRCA stream filled with sponsored tweets for a certain genetics company. Again. I cannot possibly be the only one who has noticed the spamming of the #BRCA hashtag with advertisements for this particular company’s genetic tests in the last few months. I’m over it.

Remember when Myriad Genetics set up that lame twitter account called @mysupport360 that was all “yay, BRCA+ empowerment! Give us yer money!” and tried to pretend it wasn’t related to their company? Andrea Downing, Teri Smieja, and I had a good time lampooning that lame attempt at using social media to lure in clients (this episode is documented over at Brave Bosom). Andrea also has this post on another one of Myriad’s unscrupulous attempts to dupe the HBOC community.

But Myriad Genetics aren’t the only ones playing this game. Other genetics corporates are using social media to draw in BRCA+ and HBOC patients. Forging friendships and alliances with individual patient advocates both within and without the BRCA+ community can be really wonderful for BRCA+ women, both personally (friendships with people in similar circumstances!) and also in terms of advocacy (strength in numbers!). The only problem is that some patients are being paid or given perks to advocate not only for their particular diseases or disabilities, but for particular genetic corporations.

I found this out the hard way when one of my favorite bloggers started spamming the #BRCA stream with advertisements for a certain genetics company. I tweeted her and asked what her particular relationship with that genetics company was. She direct messaged me and said they sponsor her advocacy, allowing her to do way more than she would be able to otherwise. Then she asked me to delete my tweet. I did, because I like most of her tweets. I’m not naming names here, because I respect this particular blogger’s writing and her advocacy is important (although I’m sure this post will piss her off and probably ruin our twitter friendship. That sucks.)

Recently, I’ve been noticing more of this sort of thing within the BRCA+ and larger cancer genetics community. Start paying attention and you’ll find lots of sponsored tweets–sponsored tweets that are never identified as sponsored, naturally. I expect that sort of behavior from Kim Kardashian, but I find the lack of transparency of sponsored posts in the HBOC and BRCA+ communities (both on twitter and other social media sites) profoundly disturbing.

Even more, I find the spamming of the #BRCA hashtag with tweets that are really ads for a genetics company particularly offensive because I consider that hashtag to be a lifeline to BRCA+ information, support, and genuine community building. I depend upon that hashtag for information and community every. single. day. No exaggeration.

I’m not saying people whose advocacy is being funded by genetic corporations are not actual advocates. In fact, the trend I’m noticing is that individual people start off as amateur advocates–they start blogs, they begin to tweet, they build websites, they post on BRCA+ message boards, etc.–and then are noticed by and recruited by genetics corporations who offer to help them expand their advocacy. It sounds awfully tempting.

Take, for instance, the #BeBRCAware campaign, which I first encountered at the Joining FORCEs conference in Philly. I asked the man at the booth what #BeBRCAware was all about. He told me that it was an effort to train women to become ambassadors for BRCA+ awareness. He said they even fly out potential advocates–if I recall correctly, to California–for this training. “Sign me up!” I thought.

After all, I already devote countless hours to BRCA+ and HBOC advocacy; it would be great to have some professional training and institutional support. And you know what, all this blogging and tweeting is hard work. I research stuff. I read lots of medical articles and tons of books to provide accurate information. I spend a lot of time talking to women who need emotional support or who are seeking resources. Advocacy is WORK and for me it’s an unpaid labor of love (I hate cliches, but it’s true in this case).

That’s when I noticed the small AstraZeneca logo on the booth and I was like “Oh, hells no.” Why? Because we can thank AstraZeneca for the clusterfuck that is Breast Cancer Awareness Month. Their unethical practices in jump starting Pinktober are very well documented. Here’s a quote (the tip of the iceberg really) from a frequently circulated article called “The Dark Side of Breast Cancer (Un)Awareness Month”:

“AstraZeneca, manufacturer of the blockbuster breast cancer drugs Arimidex and Tamoxifen, was formed through the merger of Astra AB and Zeneca Group (a pharmaceutical subsidiary of Imperial Chemical Industries) in 1999. Imperial Chemical Industries, a multinational corporation responsible for producing carcinogenic petrochemical derivatives such as vinyl chloride and pesticides, founded National Breast Cancer Awareness Month in 1985, in partnership with the American Cancer Society, in order to promote the widespread adoption of x-ray mammography, whose horrors we have documented elsewhere.

Sadly, Breast Cancer Awareness Month is a time of increasing awareness not of the preventable causes of breast cancer, but of the breast cancer industry’s insatiable need to both raise money for research into a pharmaceutical cure, and to promote its primary means of “prevention”: early detection via x-ray mammography.”

So basically AstraZeneca profits from producing products that give women breast cancer, profits from producing products that diagnose breast cancer, and then profits producing drugs that chemoprevent and also treat breast cancer. They’ve really got all their bases covered, don’t they? They profit from every single aspect of breast cancer risk and diagnosis. But it’s not in women’s best interests. And now they’ve set their sights on BRCA+ and HBOC women, because the Supreme Court nullified Myriad’s patent on BRCA testing.

(BTW, If you’re interested in AstraZeneca’s unethical practices, check out Gayle Sulik’s Pink Ribbon Blues,  Samantha King’s Pink Ribbons, Inc., and Maren Klawiter’s The Biopolitcs of Breast Cancer –all of them are required BRCA+ bookshelf reading.)

BRCAware

BeBRCAware has got a glossy twitter account and hashtag. They play the social media game way better than Myriad Genetics.  I see prominent BRCA+ advocates following this twitter account. Maybe they’re simply hate-following it. I hate-follow Myriad Genetics’s twitter account so I can stay on top of their unethical shenanigans. But I also see BRCA+ advocates posting pictures of themselves in the BeBRCAware photobooth at the Joining FORCEs conference (my photo of it above) celebrating their BRCA+ pride. Do they really trust AstraZeneca? Do they even realize what it means that AstraZeneca is promoting this campaign?

The profit motive here is obvious: the more people “advocating” for genetic testing, the more women will consider it and seek it out. Consequently, profits for corporate genetics (for testing itself), the mammogram industry, and Big Pharma (for chemoprevention) will grow. Post-Angelina Effect, genetic testing for BRCA testing has doubled. There’s a lot of money to be made off of desperate women from cancer-prone families who suspect they have a BRCA mutation. Corporations are happy to pay for advocacy to get in on this BRCA testing goldmine. It’s capitalism, stupid.

Have we learned nothing from the Myriad Genetics patent fiasco? Corporate genetics is about profits, not patients. Sure, patients may benefit from genetic testing, but genetic corporations are not motivated by altruism. They’re motivated by profits. And the profit motive has historically held up advancements in BRCA+ and HBOC research that could literally save women’s lives (which is why we have the Free the Data movement)

I’m not saying that strategic alliances with corporations should be utterly verboten. However, if you allow a genetics corporation to “sponsor” your advocacy, then you are entering an ethical minefield, even if you’re transparent about it (which most people aren’t).

The BRCA+ community needs to have a discussion about the ethics of for-profit genetics companies paying for “advocacy”–AKA advertising–from individual advocates with high profile presences within BRCA+ social media.

If you are a BRCA+, HBOC, or cancer genetics blogger, tweeter, or advocate taking money or free trips or other perks from genetics corporations, then you need to be very up front about that. Otherwise, you’re not an advocate. You’re an undercover employee of a genetics company.

 
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Emotional Labor of the BRCA+ Closet

Recently I was reminded of just how profoundly alienating it can be to deal with ostensibly normal people when you’re BRCA+. (I say “ostensibly” because I suspect a lot of people have health issues that they simply don’t share, because of various privacy issues or attempts to avoid stigmatization) Most of us aren’t 100% out about our BRCA mutations. Even if you post it on Facebook or host a website about your HBOC experiences that includes your real name, there will still be people who didn’t get the memo. Consequently,  running into acquaintances and reconnecting with old friends and acquaintances is fraught territory: do you tell them you’re BRCA+? Do you tell them about your prophylactic mastectomy or the recent surveillance appointments that have swallowed your calendar? When they ask “how are you?” or “what’s been going on?”, do you answer honestly, redirect, or simply lie? Even if you’re upfront about your BRCA+ status, you continually face a choice about who, what, when, and how to tell people about it.

Adding to this social minefield is the fact that it is really hard to predict how any one person will react to the news. Occasionally, people are wonderful about it–they strike the right mix of empathy, concern, support, and/or humor. But many people react badly. Some get stricken looks of their faces. Some avoid eye contact. Some change the topic.  Some launch into trite “knowledge is power” speeches. Some want details that you don’t want to divulge. A lot of people glance anxiously at your chest and then hurriedly look away. Many people react as though the entire topic is just unseemly. Then, there are the people who develop support fatigue: they’re supportive at first, but then grow sick of your continuing problems–because a BRCA mutation doesn’t simply disappear after a convenient interval, it lasts a lifetime.

In her smart-as-hell book, The Biopolitics of Breast Cancer, Maren Klawiter talks about “the architecture of the breast cancer closet” (37). The breast cancer closet–like the GLBTQ closet–once forced women to hide their disfiguring and traumatizing Halsted mastectomies from their own families; now, it requires that women with breast cancer (and I would add, with BRCA mutations) assume optimistic attitudes and pinkwash their experiences. Klawiter notes that the architecture of the closet allows “stigmatizing discourses to continue circulating freely” (121).

There are many problems that women can encounter that relate to the BRCA+/HBOC closet (a sub-closet of the larger breast cancer closet, which at this point needs to be upgraded to a walk-in closet or maybe that gargantuan one Mr. Big builds for Carrie in the Sex and the City movie, metaphorically speaking). However, the issue I’m interested in here is the way that so many of us are half-in, half-out of that closet and that, no matter how “out” or “in” you are, it requires a lot of emotional labor to navigate it. This emotional labor adds up; it can be simply exhausting. And yet hiding deleterious test results and a BRCA+ status can be a burden as well. After all, discretion is its own kind of labor requiring indirection or subterfuge.

Work exacerbates these issues. Many of us work in environments that don’t acknowledge the body and may do so in the name of gender equity (i.e. we all know shouldn’t be talking about ladyparts at work). It’s hard to explain how discomfiting it is to be thrown into professional situations where other people feel free to talk about personal matters that are deemed “appropriate” because they fall within the range of normative, but which basically oblige you to closet your BRCA+ status–especially when your brain is running “BRCA+BRCA+BRCA+BRCA+” in anticipation of an upcoming biopsy or waiting for your daughter to get her genetic test results.

And what of actual labor–the kind we get paid for? Most women with BRCA mutations, just like people with breast cancer or other diseases, still need to work and face expectations of continued production. Even if you are transparent about your health issues, coworkers and supervisors expect you to work exactly the way you did before, despite the fact that you’re now tackling major emotional, psychological, and medical obstacles. It’s hard to focus on work while carrying the practical and psychological burdens that come with being in a cancer family distinguished by continuous disease and death. It’s equally hard to focus on work when you’re jumping through the endless hoops of surveillance, grappling with the debilitating side effects of chemoprevention, or recovering from risk-reducing surgery.

Women are often told to take on this kind of emotional labor: to downplay our own needs to make others comfortable or happy. In this way, the comfort of other people–family, friends, coworkers, etc.–is prioritized over the emotional and physical needs of BRCA+ women, often under the guise of propriety. I’m not sure what can be done to fix these problems, but I’m pretty damn sick of them.