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.