The “Jolie Effect”: Managing Awareness, Risk, and Personal Choices

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Monica List, DVM, MA

On May 14, actress Angelina Jolie published an op-ed article in the New York Times (Jolie, 2013). In this article, entitled “My Medical Choice”, Jolie narrates her experience of going through genetic screening for the BRCA-1 gene mutations,1 and after testing positive, and in light of her family history of breast cancer, deciding on a bilateral prophylactic mastectomy (BPM) followed by breast reconstruction.

A deluge of media attention quickly followed. Jolie’s NYT op-ed received 1,712 reader comments, a significant number, compared to, for instance, 170 reader comments for the editorial on the Boston Marathon bombings published by the NYT Editorial Board within hours of that event. The reports and opinions that followed Jolie’s article were both positive and negative, but there is fair certainty that the vast majority approved of, and even praised both Jolie’s decision to have a BPM, and her decision to go public. Supporters commended the actress not only for publicly sharing such a personal decision, but for bringing even more visibility to the issue of breast cancer.

The less numerous critical comments focused on questions such as whether or not her decision was medically warranted, and the potential impact that her public disclosure may have on services and procedures such as genetic screening, genetic counseling, BPM, and contralateral preventive mastectomy (CPM). An additional point of concern raised by Peggy Ornstein in an article also published in the NYT (Ornstein, 2013), is that while fear of cancer is legitimate, the ways in which information about breast cancer prevention, screening, and treatment is packaged and sold to us can result in disproportionate fear and anxiety, which not only has a negative effect on women’s quality of life, but can lead to radical decisions that are not always medically necessary. Todd Tuttle, lead author of a study on CPM, refers to this phenomenon as “breast cancer over-awareness”; in her NYT article, Ornstein quotes him as saying “It’s everywhere. There are pink garbage trucks. Women are petrified.”

In Jolie’s case, the decision to undergo mastectomy seems to be medically justified – she carries the defective BRCA-1 gene, and had already lost her mother to breast cancer in 2007, at the age of 56. Shortly after the publication of her op-ed, she also lost an aunt to the same disease. However, as Norah Essali points out in the “Students 4 Best Evidence” blog, there are reasons to think that the decision may not be as unequivocal as it seems; even for a high-risk patient such as Jolie, the choice to undergo BPM is more based on risk assessment than on actual evidence (Essali, 2013). Essali’s point is supported by a systematic review published by Lostumbo (Lostumbo, et al., 2010), which analyzes data from 39 observational studies on women who underwent either BPM or CPM. The authors conclude that although BPM may reduce the incidence of breast cancer and improve survival in women with high breast cancer risk, further studies are required to obtain more conclusive evidence. In the case of CPM, the authors straightforwardly claim that there is simply insufficient evidence to prove that CPM improves survival. They suggest that the best way to gather this evidence would be through randomized clinical trials (RCT), which are sorely lacking for most if not all of the approaches to breast cancer risk assessment and management.

While the issue of using randomized clinical trials raises important ethical questions, perhaps it is necessary to take a step back, and think more broadly about the ethical dimensions of breast cancer risk assessment and management. If, as Angelina Jolie states in her article, opting for BPM, or any other form of breast cancer prophylaxis or treatment is a personal choice, and, if Todd Tuttle is correct in saying that we are in the midst of a breast cancer over-awareness epidemic (Ornstein, 2013), then improving the ways in which individual patients can make informed choices should be a high priority on the breast cancer research agenda, and perhaps gathering more and better evidence in some areas is not enough.

While it is generally accepted that scientific uncertainty is unavoidable, there is also a tendency to believe that as the body of evidence for a particular issue grows, uncertainty will tend to decrease, and that this will allow for better risk management, and ultimately, a reduction of risk for that particular issue. However, as Silbergeld points out, there are different kinds of scientific uncertainty; systematic uncertainty arises from limitations related to the type of knowledge being sought, in this case, factors that increase the risk of breast cancer, and actions to decrease that risk (Silbergeld, 1991). Specific uncertainty, on the other hand, is related to limitations of the protocols, experimental designs, and inference processes that we use to turn data into scientific evidence.

For the issue of breast cancer risk, clearly there are both systematic and specific uncertainties. More importantly, no amount of evidence will ever address the uncertainty that stems from each woman’s individual combination of risk factors, and also importantly, her values and actions with respect to those factors. According to Prado and colleagues (Prado, 2010), 75% of breast cancer patients are classified as “sporadic”, meaning that they have no family history of breast cancer, and no proven genetic risk. These authors also call attention to the fact that while models for breast cancer risk assessment take into account multiple factors, they have poor or no capability to predict individual risk.

My point is not to say that any quest for better evidence for breast cancer prevention, diagnosis, and treatment is useless in the face of uncertainty. Rather, I mean to call attention to the importance of the role of values not only in patients’ individual decisions about healthcare, but also at the scientific and policy-making levels. In 2010, federal funds for breast cancer research amounted to $631 M;2 meanwhile, a report published in the NYT in February of this year questions research priorities, arguing that priorities failed to include, for instance, prevention oriented research, as well as research on environmental risk factors (Grady, 2013).

Certainly, for women like Jolie, who carry the BRCA-1 or BRCA-2 mutations, being able to know that they are at a high risk for breast cancer before it even develops is a life-saving advantage, and a choice like PBM is one they can make (provided that they have financial access to the necessary medical care). However, the number of women who are able to know their risk for breast cancer, and make a choice about it, and more importantly, the number of women who are able to act on that choice, needs to increase exponentially if our war on breast cancer is going to move on beyond what Peggy Ornstein refers to as “a feel good” enterprise. A more careful examination of the values that influence and shape research priorities, as well as research design and implementation is an important step in this direction.

1 For more information on BRCA-1 and BRCA-2 genetic testing, visit: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

2 http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding

References:

list-cropMonica List, DVM, MA, Monica List is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

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2 Responses to The “Jolie Effect”: Managing Awareness, Risk, and Personal Choices

  1. Harry McGee says:

    I think Dr. List’s conclusions are spot on, especially given that a randomized control trial is most likely unfeasible and most published studies are false (Ioannidis JPA (2005) Why Most Published Research Findings Are False. PLoS Med 2(8): e124. doi:10.1371/journal.pmed.0020124)

  2. Beth Alexander, says:

    I appreciate Dr. List’s article and discussion. Relevant and well put. I have, however, a more nagging societal question about this issue, and our promotion in the public media of the use of resources in this way. Most women who get breast cancer do not have the warning of risk that AJ had. Should all women have bilateral mastectomies? Gender is actually the biggest risk. More important to me, however, is whether we should promote, either directly or indirectly, this use of medical resources (money) when millions of children in the world do not have enough to eat, basic life-saving immunizations, clean water, care for their mothers in pregnancy, etc. Breast cancer, with appropriate screening, is generally one that can be dealt with successfully with our current treatment modalities. Should we, or can we sequester decisions about the use of health care resources to our own national zip codes, ignoring the needs of much of the rest of the world who don’t have basic care. Can we justify making decisions like this one, and many others, because it may give us the illusion (or reality) of being safer for a few more years, when so many people have no health care at all? It is the unquestioned entitlement to spend billions and billions of dollars on health care that bother me most, particularly when we don’t really know that it is necessary or life-saving.

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