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.

 

Joining FORCEs Conference Philadelphia 2014

There’s so much I have to say about this conference that I don’t know where to start. I am overwhelmed by the whole experience and I’m going to need some time to let it all percolate.

For now though I will say that I am truly impressed by this conference and by the FORCE leadership. It’s a huge event and from a participant’s perspective it went off without a hitch. I know how much work goes into making an undertaking of this size go smoothly and Sue Friedman, Diane Rose, Sandra Cohen, Lisa Schlager, FORCE Philly, and no doubt a lot of people whose names I don’t even know deserve massive props for making it look so effortless. They have created an enjoyable, informative, and important event for BRCA+ women. Bravo!

Some miscellaneous pictures and comments:

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Before the conference, I tried to figure out a loose schedule of events that I wanted to attend by reading session descriptions and googling presenters. This didn’t work out so well, as you can see in the picture above, since there were so many sessions to choose from and often great sessions running simultaneously. I went to sessions in every time slot and came away exhausted and excited. Out of the many sessions that I saw only one was disappointing (mostly because the speaker was visibly nervous–it’s a lot of pressure to talk to these big crowds of BRCA+ people). The others far exceeded my expectations.

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The exhibition area had booths for genetic testing companies, breast cancer nonprofits, surgical offices, and various odds and ends. I came away with tons of free swag and useful pamphlets. I was pleased to see two tables focused on African American women and breast cancer.

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The Basser Research Center for BRCA had several booths set up with information on various studies seeking participants. The biggest one was for a BRCA+ registry. In return for spitting in a test tube and going over your family medical history, participants got this t-shirt. I am more than happy to spit for BRCA+ science and would eagerly do it for any legitimate researcher who asked me to. I’m also thrilled to get a Basser Center shirt and will gladly shill for them whenever I can.

However, there’s no way in hell I’m wearing a shirt that says “Spit for Science” outside my house and this one has quickly been relegated to sleepwear. Y’all, next year please can you give us something a little less gross? I would love one with just a big Basser logo or DNA or something science related on it that I can wear to yoga.

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There were film crews in nearly every session for the upcoming documentary on BRCA+ men, Pink&Blue.

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I know this panoramic view is fuzzy and I tried at least seven times to get a better one with no luck. Still, look at all those people! There’s something wonderful about sitting in a packed room of people who know exactly what you’re dealing with. I’m not usually prone to the warm and fuzzies, but this conference left me feeling optimistic and happy.

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The conference was held in the Downtown Marriott right next to Reading Terminal Market–a fantastic location. I popped in to get lunch and found some cliche pink breast cancer awareness stuff at Carmen’s cheesesteaks. If the line wasn’t so long I would’ve harangued the guy behind the register about where they send the money raised from t-shirt sales. You got away from me this time, Carmen Dude.

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This is a picture of Tara Friebel explaining the cycle of information for medical research during her session on understanding research, risk, and statistics. I have more comments on this that I’ll save for another post. At this point, I will say how great it was to have direct access to BRCA researchers and clinicians like Tara. The sessions sometimes ran long and often there wasn’t much time for Q&A, but most of the time presenters stayed long after to answer questions about individual attendee’s particular situations. Most presenters were remarkably patient and friendly.

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Here’s Andrea from Brave Bosom asking a question of Dr. Steven Narod after his presentation on genetic testing for BRCA founder mutations.  I know it’s a cliche by this point to wax poetic about the potential of the internet to forge connections, but social media has been such an important resource for me while working through BRCA+ issues. It was really cool to finally meet Andrea and other BRCA+ women like Caroline from BRCAumbrella who I’ve been talking to on Facebook, twitter, and blogs. These women are just as awesome in person as they are online–nay, more awesome.

In sum, I have very few complaints about the FORCE conference. There are a few things I’d like to see more of in the future–greater representation for GLBTQ and non-white women and more on the politics of BRCA/HBOC, for instance–but I think FORCE is doing a truly fantastic job with this event. I hope to make it to #FORCE15 next year, which will be held in Philly once again. I thought that I was well informed about BRCA+ issues, but it’s clear to me that there’s even more to learn.