Who"s Actually Accountable For Angelina Jolie"s Failure As A Breast Cancer Educator?

Angelina Jolie photograph imitating cubist painting type (Photo credit score: KiltBear/Flickr)

When the actress and humanitarian wrote a Could 14, 2013, New York Times op-ed detailing the factors for her preventative, bilateral mastectomy, I expressed concern that some girls with breast cancer may possibly conclude they weren’t doing ample to treat their own ailment. My reasoning was that the regular breast cancer patient, or standard girl assessing her breast cancer danger, may not be capable to accurately gauge how their chance of cancer or recurrence compares to Jolie’s reasonably unusual case.

Angelina Jolie was unfortunate to have inherited two faulty versions of the BRCA1 gene, harboring the varieties of changes that she reported would give her a 87% opportunity of building breast cancer in her lifetime – as properly as a 50% possibility for ovarian cancer. Her mother had died fairly young, at 56, from ovarian cancer.

Jolie mentioned at the time that she was lucky to be ready to afford the BRCA1 and BRCA2 gene testing, a $ 3,000 check whose patents by Myriad Genetics had lately been challenged in the U.S. Supreme Court. As a reminder of this perspective, Association for Molecular Pathology v. Myriad Genetics had been argued in the Supreme Court a month before Jolie’s op-ed (April 15) and the decision rendered a month after (June 13), ruling that naturally-happening DNA sequences could not be topic to a U.S. patent.

Jolie’s revelation was widely reported by the press and acquired as a optimistic message on personalized responsibility in wellness care. But two papers published online final week in the journal Genetics in Medication increase important issues about accuracy of newspaper reporting on celebrity medical problems and the total advantage of such higher-profile commentary to public health education.

So, was the reporting very good and was it beneficial?

The 1st of these papers, from a University of Alberta group led by Dr. Tim Caulfield, analyzed 103 media reports published on the topic in the U.S., Canada, and U.K. inside of 1 month of her op-ed. Far more stories appeared online and in tabloid publications, but Caulfield’s group targeted on huge, broadsheet publications known for reporting “hard news” and higher standards of journalistic excellence.

The researchers confirmed that the coverage of Jolie’s preventative mastectomy determination was widely viewed as constructive, with her selection being depicted as “brave and courageous” in almost 40% of the posts and “empowering, inspiring, and a part model for women” in 13%. These message frames were similar in occurrence across the 3 nations.

But despite limiting themselves to the highest high quality newspapers, Caulfield’s group discovered that 70% of the articles or blog posts failed to note any factor of the rarity of Jolie’s case amongst all breast cancers: that BRCA1/two mutations had been uncommon (.25% across the standard female population and two% of all breast cancer instances), that Jolie’s mutation pattern placed her at an unusually substantial danger for breast cancer, or any other mention that Jolie’s case cannot be applied to the vast bulk of breast cancers.

In contrast, 70% of the content articles did mention that BRCA1/2 mutations had been related with a much larger danger of hereditary breast (and ovarian) cancer. So, the reviews received the initial portion of the science correct but then dropped the ball by not saying how these mutations are remarkably uncommon and implicated in a little minority of breast cancer cases. And despite the timing of Jolie’s op-ed, only 11% of the posts mentioned the then-pending Myriad determination, a price and accessibility-to-care problem that the actress mentioned in her very own piece.

Public affect of reporting: “The Angelina Effect”

The paper by the University of Maryland and Johns Hopkins public wellness research team led by Dr. Dina Borzekowski followed in Genetics in Medication by assessing the affect of Jolie’s situation on public understanding of breast cancer dangers. The staff took benefit of a Harris Interactive collaboration with Hopkins’ Bloomberg School of Public Overall health where a broad variety of analysis inquiries are integrated amid periodic on the internet telephone surveys known as omnibus surveys. The journal publisher, Nature Publishing Group, at the moment offers free of charge entry to this paper for readers interested in delving further into the methodology.

The survey collected responses from a group of two,574 grownup participants over extensively-balanced demographic groups. Conducted three weeks right after Jolie’s op-ed, the survey uncovered that a impressive 74% of respondents accurately indicated that Angelina Jolie had undergone a double mastectomy to decrease the danger of developing breast cancer. (The survey itself can be identified right here as a Word document file.) In comparison, a prior survey on the Myriad case had a recall fee of only 36%.

Greater recall of this news was observed between ladies and whites of each genders, whilst lower recall was found younger, unmarried, significantly less affluent, less educated, and much less numerate respondents.

Nearly half of respondents properly recalled Jolie’s chance of breast cancer within a 10% variety (80-90%). But the bad news, and as one may well predict from Caulfield’s news coverage analysis, fewer than 10% of these respondents had the info necessary to discern the relative difference in Jolie’s breast cancer risk from that of a standard breast cancer patient. In truth, overestimation of the BRCA1/two contribution to breast cancer situations or a woman’s lifetime chance was seen a lot more often with females than guys. So while awareness seemed heightened, so was worry.

Who"s Actually Accountable For Angelina Jolie"s Failure As A Breast Cancer Educator?