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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I want BRCA1/2 testing available on demand.

90% of BRCA+ women don’t know that they carry a mutation and under the new preventive guidelines issued by the U.S. Preventive Services Task Force, many women will never know they’re BRCA+.

This kerfuffle brings to mind the recent 23andme debacle in which the FDA shut down direct-to-consumer testing by claiming that there was a chance of false positives that might led misinformed people to take drastic action. The example they used is that a woman using 23andme’s services might test positive for a BRCA mutation and then get an unnecessary prophylactic mastectomy. It’s a ridiculous example, since women can’t waltz into a surgeon’s office and cavalierly get a mastectomy. Doctors do not accept 23andme’s testing. In cases where women have tested positive for a BRCA mutation through 23andme, their doctors ordered genetic testing to confirm the results. There are many stories of this floating around the online BRCA+ community and no stories of false positives leading to unnecessarily prophylactic mastectomies.

I can’t help but notice how few women these new guidelines will actually serve. Just 10% of women will qualify for genetic testing. These women are deemed “high risk” because they have a number of close family members with breast or ovarian cancer. Under these guidelines, I would not have been tested for a BRCA mutation. I did not have a strong family of breast and ovarian cancer–or so I thought. Just a few years ago, I believed that there were only two cases of breast cancer on my father’s side of the family. Over the course of 15 years of annual gynecological visits and breast exams, my doctors repeatedly reassured me that these two cases were probably sporadic and that my risk was normal because breast cancer risk is inherited matrilineally. They were, obviously, wrong: breast cancer risk is inheritable patrilineally, as well as matrilineally.

Even if my doctors had been better informed, even if they had been aware that women can inherit their breast cancer risk from their fathers, they still would not have recommended BRCA testing for me under these new guidelines. As one doctor comments: “There is a very clear-cut algorithm for whether or not to test someone for a BRCA mutation […] Simply having breast cancer in the family is not sufficient.” Certainly, two cases of postmenopausal breast cancer in my family did not appear to present a pattern of hereditary cancer to my doctors. And yet, here I am, BRCA+.

All these years, I believed myself to be among the 90% of women with an “average” risk of breast cancer. I don’t think my former ignorance is unique. Women may not always know their family medical histories. This is particularly true of breast and ovarian cancer, which until the 1990s were considered shameful and inappropriate to talk about. The only reason I received genetic testing at all is because one of my father’s relatives fought hard to get herself tested despite the reluctance of her doctors, who dragged their feet for months. She tested positive for a mutation and so did I. It wasn’t until that point that I discovered my family’s extensive history of breast cancer and other BRCA-related cancers.

So now I’m wondering: if 90% of BRCA+ women don’t know they have a genetic mutation that puts them at risk, and if many women don’t know their family medical histories, then how are genetic counselors going to correctly identify that 10% of high risk women who should be tested? After all, to even talk to a genetic counselor, a woman needs to be referred by her doctors. And doctors are notoriously ignorant about BRCA+ issues (see Teri Smieja’s book on this). Still, the “USPSTF recommends against routine genetic counseling or BRCA testing for women whose family history is not associated with an increased risk for mutations in the BRCA1 or BRCA2 genes.”

Genetic testing for BRCA mutations should be widely offered and available on demand.

Here are some arguments against this (and why those reasons are stupid):

1. It doesn’t make sense to screen widely for a mutation that so few women actually have. BRCA+ women make up less than 1% of the population, but we already screen people for other rare diseases. For instance, only .66% percent of women get cervical cancer, yet we screen for that annually as soon as girls become sexually active. At the same time, 1% is a huge number of people when you consider that the population of the U.S. is over 300 million people.

2. It would cost too much. Many people have complained about the cost of genetic testing. However, now that Myriad’s patents have been invalidated by the Supreme Court, other genetic laboratories are now offering BRCA testing and this competition is driving the price of tests down. What’s more, BRCA testing is (usually) a one time event and that means a one time cost. If testing were available on demand, then insurance companies would have to cover it the way they cover cholesterol tests and pap smears.

Returning to the example of cervical cancer screening, surely it’s cheaper to test for a BRCA mutation once than it is to test all sexually active women and girls annually for cervical cancer. Nor is it cost-effective to do annual mammograms for women over 40, yet we still do even though it isn’t beneficial as BRCA testing. U.S. medicine is not cost-effective in general. That’s a genuine problem that needs to be solved, but in the meantime I doubt widely available BRCA testing would be the straw that broke the camel’s back.

3. Genetic testing should not be taken lightly and many women may not be ready to deal with deleterious results.  I don’t actually think that most women undertake genetic testing lightly and I doubt that most women would even do BRCA testing if it were offered by their doctors–a lot of people simply don’t want to know and that is a valid choice. Even if some small minority of women were to blithely rush into testing, you cannot protect people from their own stupidity. Nor can you deny well-informed women access to their data because of an infinitesimal number of idiots.

As for women not being ready to deal with the news that they are BRCA+: is anyone? It’s bad news, no matter how you parse it. This is why the profession of genetic counseling has emerged over the last two decades to help people deal with bad news about their genes. While I have had very bad experiences and would personally like to avoid it in the future (that’s a whole ‘nother post), freely available BRCA testing would still have to involve professional genetic counseling. And again, hand-wringing paternalism has no place in modern medicine.

The USPTF has “warned that unnecessary BRCA testing could potentially cause harm.” I don’t buy it. Now that we’ve won the skirmish over genetic patenting, “BRCA TESTING ON DEMAND!” should be the next BRCA+ battlecry.

On a related note, FORCE has identified some other problems with the new guidelines. Go sign their petition here.

Free the Data

“Free the Data” is a grassroots movement to share genetic and medical information about BRCA+ mutations. I admit that I am reluctant to dive right into data sharing. I still feel a stigma from having a mutation. I have been surprised by how ashamed it makes me feel. Logically I know that I have nothing to be ashamed of, but it’s also hard to shake off these feelings when my body has been officially deemed aberrant by modern medicine. I oscillate between telling too many people about my BRCA+ status and hiding it. At this point, my BRCA+ diagnosis is still relatively new. I hope that eventually I will feel more comfortable talking about it publicly without a pseudonym. For now, I want to guard my privacy.

Thankfully, there’s a group of vocal BRCA+ women who are braver than I. Andrea over at Brave Bosom has been posting a lot about this, so go check out all the info she has gathered together.

Here’s a short video introducing the Free the Data movement:

And another much longer video of a symposium on BRCA+ data that was held at UVA Medical Center (the panel includes Joanna Rudnick). It’s well worth watching.

After doing some research on the Free the Data movement, I called Myriad Genetics to ask what they know about my specific mutation. The woman I spoke to was very nice and patient, but ultimately not helpful. I wanted to know how risk varies by mutation, but she claims that Myriad doesn’t keep track of variations in risk across mutation because the differences are negligible. I find that an unsatisfying answer. She also told me that the chances of a false positive are “extremely low” because Myriad runs the test twice and is reviewed two independent groups. I asked if there was any information that Myriad had on my mutation that she could share with me. She said no.

The one interesting thing that she told me is that 700 people have tested positive for my specific mutation. I know five of them are from my family, since we tested through Myriad back when they had a monopoly on testing. I wish I could say hello to the other 695 people. Thanks to founders effect, many of them are probably distant relatives. Galia has written about finding a cousin through online BRCA+ support groups. Having a BRCA mutation has very few upsides, but reconnecting with relatives would definitely be one of them.