Health News Review

No, according to a study published in the journal Genetics in Medicine this week.

And the researchers had several direct messages for journalists, such as:

  • Celebrities can successfully raise awareness about a health issue, but it is a greater challenge for health journalists to ensure accurate understanding.
  • As our understanding of the genetic contribution to disease risk continues to unfold, it will be vital for health journalists to seek out clinical and scientific experts who can communicate population risks in ways that inform, rather than alarm.

The NPR Shots blog summarized the study:

Researchers at the University of Maryland and Johns Hopkins surveyed over 2,500 Americans and found that while 3 out of 4 knew that Jolie had gotten a mastectomy, less than 10 percent properly understood Jolie’s condition.

News coverage about Jolie’s mastectomy tended to gloss over how rare her situation was, another recent study found. The genetic mutation that Jolie has only accounts for 5 to 10 percent of all breast cancer cases.

Nature World News reported:

“Ms. Jolie’s health story was prominently featured throughout the media and was a chance to mobilize health communicators and educators to teach about the nuanced issues around genetic testing, risk, and prophylactic surgery,” explained lead author Dina Borzekowski, a research professor in UMD’s Department of Behavior and Community Health. “It feels like it was a missed opportunity to educate the public about a complex but rare health situation.”

In the same journal is another paper, “Angelina Jolie’s faulty gene: newspaper coverage of a celebrity’s preventive bilateral mastectomy in Canada, the United States, and the United Kingdom.” The researchers wrote:

The results show that although the press discussed key issues surrounding predictive genetic testing and preventive options for women at high risk of hereditary breast/ovarian cancer, important medical information about the rarity of Jolie’s condition was not communicated to the public.

The results highlight the media’s overwhelmingly positive slant toward Jolie’s mastectomy, while overlooking the relative rarity of her situation, the challenges of “celebrity medicine,” and how celebrities influence people’s medical decisions. Future research is required to investigate whether the media hype has influenced demand and use of BRCA1/2 testing and preventive mastectomies.

Let’s see how many news sources report on these studies compared with those who reported on Jolie’s original statement and NYT editorial.

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Comments

Dr. Oliver posted on December 23, 2013 at 11:07 am

It would be inaccurate to describe genetic mutations and cancer as “rare”. For example, the prevalance of the BRCA mutation as discussed here can run as high as 27% in premenopausal women with family history of breast or ovarian CA in other members. This is not an uncommon diagnosis, and there are clearly other patterns of mutations we haven’t characterized yet which likely pose similar risks of breast cancer development.

Prophylactic surgery as was demonstrated by data from the Mayo clinic several decades ago, is in fact very successful for decreasing the risk of future development of breast cancer in high risk patients, reducing expected rates >90%. While it may not in fact affect disease specific mortality much ( in many/most women which is affected more by their 1st cancer rather then a future potential one), the attitude taken that it is unnecessary or inappropriate for most patients is off base. We already liberally use adjuvant radiation on breast cancer patients for less of a beneficial effect on recurrence or mortality. As our treatments of primary disease get better, we may in fact experience that prophylactic surgery on younger patients with 4-5 decades of life expectancy will do better by maximum risk reduction of future disease.

    Gary Schwitzer posted on December 23, 2013 at 11:37 am

    Dr. Oliver,

    Thanks for your comment.

    I didn’t see where the cited study – or the news stories cited – referred to all genetic mutations as rare. They were referring to Ms. Jolie’s case.

    I also didn’t see any “attitude taken that (prophylactic surgery) is unnecessary or inappropriate for most patients.” So I’m not sure what you were referring to.

Dana posted on December 24, 2013 at 8:51 am

Most prominently absent from coverage of Angelina Jolie’s mastectomy was any discussion of the sequelae, especially those that women with less access to follow-up are likely to suffer. Lymphedema, chronic pain, scar contracture, loss of sensation – I can’t remember reading a single reference to even one of those conditions in any of the stories. It’s true that what might have happened to Ms Jolie and people like her, without the surgery, needed better explication. But far more important in my mind is explication of what happens to women who do have the surgery.