Actor, humanitarian and global icon Angelina Jolie announced this week that she had undergone a prophylactic double mastectomy. This news both shocked and intrigued audiences across the world. Jolie told her story in the New York Times. She had tested positive for a genetic variation (BRCA1), which left her with a high risk for developing breast and ovarian cancer. The death of her mother at 56 (reported elsewhere as from ovarian cancer) was a key factor. After having genetic counselling Jolie opted to have both breasts removed and Jolie is also planning removal of her ovaries.
Jolie features regularly in diverse news and celebrity media outlets and few actors have provoked greater scrutiny for their body image and lifestyle choices. She is regarded as having had a measurable effect on everything from adoption to choice of baby names. In short Jolie is an ‘uber icon’ with a powerful brand (her potential marriage to Hollywood actor Brad Pitt is the continued source of fevered speculation). Now Jolie is charged with generating awareness of genetic risk. Her image features on the front cover of Time magazine under the strapline “The Angelina Effect” and the article debates the pros and cons of genetic testing.
Jolie has attracted widespread praise for her bravery in discussing a procedure that is closely intertwined with powerful ideas of femininity and sexiness. Announcing that she had her breasts removed was likened to “a handsome leading man announcing he is gay”. At the same time she has long been considered “edgy” in Hollywood terms for example being open about past relationships with women. The impact of Jolie’s decision on utilisation of health services remains unknown but past evidence suggests that celebrities can have a powerful effect. That such a global ‘star’ should so openly discuss their treatment is ground-breaking but prophylactic mastectomies and ‘high risk’ ‘ordinary’ families have proved to be attractive to media for some time.
I was involved in a study to analyse how breast cancer risk was reported in UK media. Interestingly although genetic risk accounts for a relatively small proportion of cases it was the risk factor most commonly cited in media reporting. The analysis showed that genetic risk stories of breast cancer (outside traditional news slots) tended to be less about ‘science’ than about family relationships, drama and dilemmas. They appeared in slots usually reserved for the exploration of sexuality and emotions. The attraction of breast cancer genetics as a way of making genetics ‘dramatic’ and ‘accessible’ were used by press officers and campaigners who said the topic appealed to journalists because they could tell stories involving ‘death, sex, love, motherhood and the right to choose’.
Genetic/inherited breast cancer can evoke powerful emotions including fear and tragedy of early death or multiple bereavement. The stories are compelling because they deal with uncertainty and difficult decisions. They also have a powerful effect in terms of how women discuss their own risk. For example women who took part in the media and breast cancer study with just one relative, or two elderly relatives, who had breast cancer, saw this as a reason for feeling at risk. Others, with no known family history, interpreted this to mean that there was very little risk of them contracting the disease.
The emphasis placed on inherited risk cannot be attributed solely to specific media coverage. Other factors come into play including personal experience and questioning about family history by doctors as well as pre-existing cultural ideas about the importance of inheritance and the cultural ‘geneticisation’ of illness. However the sheer quantity of reporting about genetic/inherited risk perpetuated the idea that it was the main risk factor. Stories about women from ‘breast cancer families’ made a profound impression and the youth of those affected was often remembered as a salient feature.
Media accounts may convey ideas about inherited risk independently from knowledge about research discoveries and genetic ‘facts’. Genetic risk appeals to a broad range of media because it is about inheritance and family relationships and decisions. It offers the potential to explore the dilemmas and to exploit the drama of ‘a family curse’. Such stories contain elements of popular hospital drama and family complications of primetime soap opera. The danger is that the deluge of media coverage sparked by Angelina Jolie’s story will increase fear and help fuel the idea that early mastectomy is the right or only option for other women. Less invasive surgery (lumpectomies) or additional breast screening are possible choices. Celebrity and ill health is a heady mix and it is important that these stories are countered with balanced and nuanced information.
4 Responses
Ewen Speed on May 19, 2013
Thanks for this post Lesley. There was an interesting piece in the Observer today on how this case raises wider issues of patenting of genes linked to breast cancer and how this is driving up the cost of testing. Certainly, in US contest, can’t help thinking it would not be so easy for the ‘non-celebrity’ to undertake this sort of preventative action.
Ilana Löwy on May 20, 2013
Just saw your interesting post on Angelina Jolie’s preventive mastectomy
on MedSoc news. I’d like to add a few more points:
a) rates of preventive mastectomy for BRCA mutation carriers vary widely
(from 0 to 50-60%) between countries (we have very few of those in
France), but also between medical centers. So its far from being a
unproblematic medical recommendation.
b) Jolie had a subcutaneus mastectomy with preservation of breast’s skin
and nipples– a procedure that gives much better aesthetic results (and is
more expensive), but is considered insufficiently safe by many (but not
all) experts.
c) the issue was framed mainly as cosmetic surgery problem (she suffered
some pain and discomfort, butnow she is fine, and her children cannot see
any difference in her breasts now); no talk about loss of sensitivity of
the breast (although it may be less, with skin-preserving surgery), risks
of complications, not infrequent problem of chronic pain following
mastectomy.
d) I’m curious to know where the number “she has 87% risk of developing a
breast cancer” came from. To the best of my knowledge, even with “public”
BRCA mutation, such as the “ashkenazi mutations”, where there is a great
number of women with identical mutation, it is not possible to give this
kind of precision in the evaluation of risk. The usual estimates for BRCA1
are 50-65% lifetime risk of breast cancer and for BRCA2 40-55%. The
ovarian cancer risk is lower ( about 15-30%, but here the estimates are
less precise); its higher in “ovarian cancer families” such as the one of
Jolie. but of course ovarian cancer is much more deadly. If my mother
would have died from BRCA linked ovarian cancer, I would have, without any
doubt, seriously consider a preventive oophorectomy.
e) nobody seems to mention Myriad’s ownership of the BRCA genes, and the
ongoing US trial to contest this ownership.
Apologies for the self publicity, but I wrote about this topic
in my book “Preventive Strikes” (Johns Hopkins UP, 2009), esp chapter 8.
Lesley Henderson on May 20, 2013
Dear Ilana, Thank you very much for your thoughtful response to the post. I am most interested in following up your reference and I agree that this event raises many important questions
not least concerning issues of public understanding/expert calculation of risk as well as
commercial imperatives as related to genetic testing. The story of genetic ‘ownership’ is certainly worthy of an article in its own right. As Ewen also points out, the ‘Angelina’ story raises other important concerns about access to (risk reduction) healthcare in a US system that is already seriously skewed.
Koichi Ito on Jan 2, 2014
What if Sofia Vergara or Salma Hayek underwent preventive double mastectomy instead of Angelina Jolie? Does that makes any different in news and media?