Yesterday, December 19, 2013, journal
Genetics in Medicine published two articles
The Angelina effect: immediate reach, grasp, and impact of going public and
Angelina Jolie’s faulty gene: newspaper coverage of a celebrity’s preventive bilateral mastectomy in Canada, the United States, and the United Kingdom that really go into depth explaining what is wrong with public understanding of complexity decisions based on genetic testing. The scientists were extremely interested in studying public response to Angelina Jolie’s announcement in
New York Times Op-ed about her preventive double mastectomy because it explains broad public understanding of the genetic testing and important for communication between physicians and patients.
The story was featured in news and entertainment media of all kinds; Ms Jolie’s picture appeared on the cover of People magazine on two consecutive weeks following her revelation (15 May 2013 and 22 May 2013) and TIME magazine (27 May 2013) as well as a host of European and Asian periodicals. In Britain, Jolie’s picture appeared on the front page of every national newspaper immediately following her disclosure.
The Angelina effect: immediate reach, grasp, and impact of going public
This is not the first time scientists study "celebrity effect" on public understanding of health related personal stories that
"have the potential to stimulate public interest and awareness of illness or medical procedures, inspire others to face similar medical issues, and promote public health policy. Media coverage of celebrity cancer experiences has been shown to impact health service utilization and adherence to preventive health guidelines" However, this is a first time this study has a "genetic component" to it. In fact, there is a significant difference in between a story were diagnosis is known and a story preventive action based on genetic test. What the both study have shown that often the message gets garbled in media and/or is not a simple matter to understand for a lay person. The first study,
The Angelina effect, was conducted in US using a survey with a representative national online panel of 2,572 adults. The second study analyzed articles published in leading "newspapers in Canada, the
United States, and the United Kingdom. The data set consisted of 103 newspaper articles published in the first month of media coverage."
You can listen to a podcast of the Genetics in Medicine journal with authors of the studies discussing the results and conclusions.
Here is the summary of the conclusions reached by the authors of these 2 studies.
The Angelina effect: immediate reach, grasp, and impact of going public
While three of four Americans were aware of Angelina Jolie’s double mastectomy, fewer than 10% of respondents had the information necessary to accurately interpret Ms Jolie’s risk of developing cancer relative to a woman unaffected by the BRCA gene mutation. Awareness of the Angelina Jolie story was not associated with improved understanding.
Significant differences in awareness existed across sociodemographic groups with higher recall of the story among women and whites and lower recall among younger, unmarried, less affluent, less educated, and numerate respondents. There were no significant differences in story awareness evident in regard to geographical region and family history of cancer.
Among respondents aware of the story, almost half (47%) reported her risk within a reasonable range (80–90%) of Jolie’s disclosed estimated risk of 87%. Among respondents who accurately reported Jolie’s estimated risk, fewer than 10% had the information necessary to interpret Ms Jolie’s risk of developing cancer relative to a
woman unaffected by the BRCA gene mutation.
We found that individuals aware of the story and who reported at least one affected firstdegree relative were less likely to rate their personal risk as higher than the population average relative to those who had similar family health histories and did not know the story (39 vs. 59%; P < 0.05). Perhaps even more striking and worrisome is that about half of all individuals aware of the story and without a family history of cancer rated their cancer risk as lower than the population average relative to those without a family history and unaware of the story (47 vs. 52%, but the difference was not statistically significant).
Although the story was widely reported, only 3.4% of the respondents who were aware of the story indicated that they had read Ms Jolie’s commentary originally in The New York Times. Most respondents became aware of the story though a national or local television news story (61.2%) or entertainment piece (21.5%). A quarter (25.7%) of respondents reported exposure to the story from two or more information sources.
Angelina Jolie’s faulty gene: newspaper coverage of a celebrity’s preventive bilateral mastectomy in Canada, the United States, and the United Kingdom
We found that Jolie’s preventive mastectomy attracted significant attention from the news media in each country. Most coverage occurred within the first 3 days after the breaking news of Jolie’s surgery on 13 May 2013—44 articles (42.5%) were published between 14 May and 16 May: 8 (7.8%) on 14 May; 32 (31.1%) on 15 May; and 14 (13.6%) on 17 May. Subsequent coverage was less frequent, but media attention to the story remained steady in all three countries.
Results show that the story was prominently featured in the news section of elite newspapers, unlike the more traditional placement of celebrity news in the entertainment or lifestyle sections. Forty articles (38.8 %) were published in the news section, and 5 articles (4.9%) were placed on the front page of newspapers. Furthermore, 32 articles (31.1%) were news stories, 24 (23.3%) were editorial or
opinion pieces, 8 (7.8%) were investigative reports, 9 (8.7%) were columns, 8 (7.8%) were health or lifestyle articles, and 22 (21.4%) were categorized as “other” (e.g., interviews and letters to editor).
The primary framing of Jolie’s decision in 40 articles (38.8%) was as “brave and courageous,” in 23 articles (22.3%) as “rational, well-informed, and evidence based,” in 13 (12.6%) as “empowering, inspiring, and a role model for other women,” and in 4 (3.9%) as “fearful and made under duress”; only one article framed it as “an act of narcissistic and attention-seeking celebrity”.
The primary issue concerning BRCA1/2 gene mutations highlighted in 72 articles (69.9%) was the increased risk of hereditary breast/ovarian cancer. Other concerns were the primary focus of 23 articles (22.3%), particularly the low percentage of women who carry BRCA1/2 mutations, the cost of genetic testing, the impact of predictive genetic testing on patients’ mental health, or general discussions about preventive medicine.
The gene patenting controversy was discussed in 11 (10.7 %) of the news stories, 7 of which were published in the United States, 1 in Canada, and 3 in the United Kingdom. Nine articles suggested that striking down the Myriad patents on BRCA1/2 tests would lower the cost of genetic testing—one in Canada, five in the United States, and three in the United Kingdom. Five articles expressed concerns that a decision by the Supreme Court to invalidate Myriad’s gene patents would stifle innovation in biotechnology—one in Canada, three in the United States, and one in the United Kingdom. Only two articles suggested that invalidating patents of human genes would spur innovation in the biotechnology industry—one in Canada and one in the United States.
The results of both studies highlighted the complex issue of genetic testing and its practical result. They clearly demonstrated that "over-the-counter" genetic testing is for the future and not for today. Even before these studies the same journal,
Genetics in Medicine published other articles on the same subject highlighting complexity of the genetic testing and its practical use. The first of these article/study
“Trust is not something you can reclaim easily”: patenting in the field of direct-to-consumer genetic testing served the purpose to
"analyze the patent portfolio of this prominent direct-to-consumer genetic testing company (23andMe) and discuss the potential ethical implications of patenting in this field for public participation in Web-based genetic research." The authors of this study published in November of 2012 came to conclusion
An important lesson to be drawn from this ongoing controversy seems to be that any (private or public) organization involved in research that relies on human participation, whether by providing information, body material, or both, needs to be transparent, not only about its research goals but also about its strategies and policies regarding commercialization.
This is actually was a part of the FDA demands that
23andMe failed to provide.
The second article
Personalized medicine and genetic malpractice
ahead of the aforementioned two studies of "Angelina effect" was predicting some of their conclusions.
This so-called “Angelina effect” exemplifies a growing consumer interest and medical uptake of genetic testing in response to the increased availability and utility of clinically relevant genetic data. The advent of next-generation DNA sequencing will further accelerate this trend toward increased reliance on genetic data in the health-care system, and health-care providers, in almost every specialty, will be required to have some familiarity with genetic data.
The article also addressed another issue that public often tends to miss excited by the general media optimistic and futuristic tone:
... as the use and usefulness of genetic information in clinical decision making continues to expand, the specter of lawsuits against physicians and other health-care entities for genetic malpractice also becomes a reality. Consider the following three cases from the past year, which illustrate three major areas of genetic testing in which potential liability is a growing concern—cancer predisposition screening, prenatal testing, and pharmacogenomic profiling.
A woman from Connecticut sued her physician for failing to warn that her extensive family history of breast cancer suggested a genetic risk of ovarian cancer. The Connecticut Supreme Court recently upheld a $4 million jury verdict to her after she went on to develop ovarian cancer.
A couple from Oregon successfully sued their physicians and hospital for negligence in performing and interpreting prenatal genetic testing for Down syndrome. The jury awarded the parents $3 million in damages after the child was born with Down syndrome.
A woman from California sued her health-care providers for prescribing carbamazepine without first recommending genetic testing as recommended by the label approved by the Food and Drug Administration for patients of Asian ancestry.
The woman, who is of Asian descent, developed Stevens–Johnson syndrome after being prescribed the drug. Her case is currently in arbitration.
While analyzing preparedness of the medical community to personalized medicine and use of genetic testing the authors express the following sentiment
there are likely to be many actual or perceived victims of inadequate or erroneous applications of personalized medicine. Adverse drug effects, for example, are the sixth leading cause of death in the United States, accounting for over 100,000 fatalities per year, in addition to more than 2 million hospitalizations.
The authors emphasize that
there is a lack of preparation for the genetic era in the provider community. A recent survey by the American Medical Association (Chicago) and Medco (St Louis) found that most medical schools have only recently begun training their medical students in genetics, and only 29% of physicians reported any training in genetics.8 Moreover, 98% of surveyed physicians believed that genetics was important for making clinical decisions, but only 10% were actually using genetic information in their practices. Meanwhile, the number of genetic counselors and physicians with specialty training in genetics is already inadequate (~3,000 nationwide for each category).
Obviously, there is even bigger gap in public understanding and expectation of the outcomes of the personalized genetic approach and current reality of its application. If anything these news and information should convince consumers and patients to proceed with caution and more rely on the professional medical advise than on do-it-yourself genetic screening.
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