Breast cancer and scamming vulnerable women: what you need to know

My mom was just a kid when she lost her mom to breast cancer. This makes her justifiably terrified of breast cancer and related cancers. But calling these “silent killers” with high profile news coverage (see Angelina Jolie) can cause panic and fear. Direct to consumer genetic testing can exploit these sensitive emotions. Is this message scamming vulnerable women, like my mom?

Part 1 of the story on direct-to-consumer advertising in the word of breast cancer genetic screening

What is the genetic risk of breast cancer? Does selling genetic tests exploit women?

For years, a growing industry has exploited vulnerable patients’ fears and anxieties to sell products. This comes in many forms, including advertising directly to patients, with the risk of scamming them. Exploitative advertising can make women more afraid, and less empowered, to take control of their health. This is dangerous and unfair to women, because powerful messaging about lifestyle modification is lost.

Direct to consumer advertising: exploiting the vulnerable?

The United States is one of the few countries of the world that allows direct to consumer advertising. This direct advertising probably does more harm than good to patients (and sure costs a lot). Let’s focus specifically on breast cancer here.

Breast cancer is a special case of unacceptable fear mongering and exploitation

Breast cancer is possibly the most emotionally charged cancer because so much of a women’s identity, body image, and sexuality is linked to this sensitive tissue. Undoubtedly, this increases the risk for scamming.

Unsurprisingly, being told your genes can give you cancer can cause incredible anxiety and panic. Scared patients may be more likely to pay money, like the $13.5 million for genetic testing after Angelina Jolie’s announcement in 2013. Unfortunately, the people who needed testing the most likely weren’t even being tested.

Breast cancer is incredibly emotionally sensitive. Targeting vulnerable women with direct to consumer advertising can easily be exploitative.

What is your actual risk of breast cancer if you have the “bad genes”?

The risk depends on the specific gene. The most well known bad genes are BRCA1 and BRCA2. Others genes are less dangerous, and include ATM, CHEK2, and PALB2.

Let’s say you have the worst genes, what’s your risk? With all the advertising and fear mongering, many patients believe the risk is overwhelming. But the data isn’t necessarily there. The lifetime risk is around 50% in two recent studies (1 and 2). And the risk only goes lower based on less risky genes.

Naysayers galore

These studies aren’t perfect. Many will rush to say these are imperfect estimates. That’s true. An older study had numbers closer to 70% chance of developing breast cancer by age 80.

However, this is can become a distraction. Regardless, 50% or 70% is serious (and a LOT worse than COVID). But this distracts from the whole picture: patient empowerment.

Why is this a patient scam? Because it disempowers women over breast cancer.

If patients with BRCA1 have a 50% risk of developing breast cancer, that’s like flipping a coin. So why do 50% of women not develop breast cancer?

If genes determine ~50% of breast cancer risk, what determines the other 50% of cancer risk?

The patient empowerment message is missing.

Ultimately, advertisers conveniently ignore that breast cancer is just as heavily influenced by lifestyle. Indeed, alcohol, obesity, past pregnancies, hormone therapy, and more all contribute to breast cancer risk. But there’s much less emphasis on the lifestyle factors that patients can change. Emphasizing genes that can’t change, without educating patients on what they can change, promotes fear.

Charging patients for a test without educating them to take control of their breast cancer risk? Sounds like a scam.

Selling genetic testing directly to patients without fully explaining the complicated statistics can have real harm. There’s no doubt, genetic testing can be powerful, but it needs to include patient education and empowerment. It can’t emphasize the genetics and downplay patient power, like a scam that runs interference. Furthermore, causing fear about genetic information may even worsen your risk for bad outcomes.

If nothing else, incredible spending on pharmaceutical advertisement has to come from someone’s pockets.. probably yours and mine.


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Patients deserve to know the medical secrets used against them. Please share this information with your loved ones!


If you have more questions, I want to answer them! You can e-mail me here.


The information provided in this post in intended for general education. It is not medical advice. While I make every effort to provide the most up-to-date information, please note that new data is continuously becoming available and may change the conclusions I present here.

References

Gill J, Obley AJ, Prasad V. Direct-to-Consumer Genetic Testing The Implications of the US FDA’s First Marketing Authorization for BRCA Mutation Testing. JAMA. 2018;319(23):2377–2378. doi:10.1001/jama.2018.5330

https://www.fda.gov/drugs/information-consumers-and-patients-drugs/impact-direct-consumer-advertising

Ventola CL. Direct-to-Consumer Pharmaceutical Advertising: Therapeutic or Toxic?. P T. 2011;36(10):669-684.

Kruk, Joanna. “Lifestyle components and primary breast cancer prevention.” Asian Pacific Journal of Cancer Prevention 15.24 (2015): 10543-10555.

Moyer, Virginia A. “Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: US Preventive Services Task Force recommendation statement.” Annals of internal medicine 160.4 (2014): 271-281.

Kuchenbaecker KB, Hopper JL, Barnes DR, et al. Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers. JAMA. 2017;317(23):2402–2416.

Roberts, M.C., Dusetzina, S.B. The effect of a celebrity health disclosure on demand for health care: trends in BRCA testing and subsequent health services use. J Community Genet 8, 141–146 (2017).

Desai, Sunita, and Anupam B. Jena. “Do celebrity endorsements matter? Observational study of BRCA gene testing and mastectomy rates after Angelina Jolie’s New York Times editorial.” Bmj 355 (2016).

Julia H. Rowland, Katherine A. Desmond, Beth E. Meyerowitz, Thomas R. Belin, Gail E. Wyatt, Patricia A. Ganz, Role of Breast Reconstructive Surgery in Physical and Emotional Outcomes Among Breast Cancer Survivors, JNCI: Journal of the National Cancer Institute, Volume 92, Issue 17, 6 September 2000, Pages 1422–1429

Hu, Chunling, et al. “A population-based study of genes previously implicated in breast cancer.” New England Journal of Medicine 384.5 (2021): 440-451.

Dorling, Leila, et al. “Breast Cancer Risk Genes-Association Analysis in More than 113,000 Women.” N Engl J Med (2021): 428-439.

https://www.nejm.org/doi/full/10.1056/NEJMe2035083

Mahase, Elisabeth. “Covid-19: death rate is 0.66% and increases with age, study estimates.” BMJ: British Medical Journal (Online) 369 (2020).

Lee, Andrew, et al. “BOADICEA: a comprehensive breast cancer risk prediction model incorporating genetic and nongenetic risk factors.” Genetics in Medicine 21.8 (2019): 1708-1718.

Turnwald, B.P., Goyer, J.P., Boles, D.Z. et al. Learning one’s genetic risk changes physiology independent of actual genetic risk. Nat Hum Behav 3, 48–56 (2019).

Donohue, Julie M., Marisa Cevasco, and Meredith B. Rosenthal. “A decade of direct-to-consumer advertising of prescription drugs.” New England Journal of Medicine 357.7 (2007): 673-681.

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