Nurturing Women and the BRCA Genes: Gender, Activism and the Paradox of Health Awareness

Abstract

This paper explores the relationship between breast cancer activism and a newly emergent arena of ‘predictive’ medicine, breast cancer genetics. Drawing on ethnographic research in UK cancer genetic clinics, it explores the way the goals and gendered values of a certain kind of breast cancer activism operate at the interface between patients and practitioners. It examines how the morality of health awareness and the value female nurturance are implicated in and configured by clinical encounters. Outlining the dense and dynamic ‘traffic’ around the work of transmission, the paper examines how the same gendered values that may enable this field of practice can also result in uneasy consequences for patients, their kin, as well as practitioners. Exploring these intersections demonstrates the scope and challenges for knowledge and care, as well as the paradoxical value of health awareness in an emerging field of genetic medicine.

Notes

Notes

[1] These shifts partly reflect the rapid increase in attendance at specialist genetic clinics for those at risk of breast cancer that have come to constitute almost two-thirds of all referrals to cancer genetic clinics (Wonderling et al .2001).

[2] This included observing clinical encounters (n = 40) and interviews with women attending the clinics (n = 17) and also a number of practitioners working in these settings.

[3] See (Gibbon 2006) for further discussion of how ‘gendering’ activities outlined in this paper emerge at the intersection of a broader range of publics, medical practitioners and scientists.

[4] The women described here were ‘unaffected’: they did not and had not had breast cancer. Most were white, they ranged in age from twenty to mid sixties. All have had a family history of the disease that in most cases placed them in the ‘moderate’ risk category.

[5] Other papers published by the author have explored these types of patient identification in the way that family history is perceived, understood and represented by those attending cancer genetic clinics (Gibbon 2002; forthcoming).

[6] Patients are in fact legally responsible for disclosing information about possible genetic risk to other family members. See UK Clinical Molecular Genetics Society paper on Gene Patents and Clinical Molecular Genetic Testing in the UK January 1999 for further discussion of this.

[7] The value of mammography screening for those at increased genetic risk of breast cancer who are under fifty is subject to much debate and discussion—see for instance (Lucassen et al 2001).

[8] Research with persons considered to be at risk, on the basis of their family history, who either decline an offer of a referral to a cancer genetic clinic from a GP or who for whatever reasons simply never reach these clinics, has been somewhat neglected in social science analysis of developments in genetic medicine.

[9] It is possible that such difficulties could have been compounded by the necessary involvement of a male relative. There is a significant gap in the social science literature examining the perceptions and experience of male relatives with breast cancer as well as the involvement of male relations in the sharing risk information, which is only just beginning to be filled (Hallowell et al .2005).

[10] See (Eckman 1998) for further discussion of this ‘sanctioning’ work.