Whiteness as a bioethical problem

Below is a link to a pdf of my keynote at the Australasian Association for Bioethics and Health Law conference in Townsville, 22nd-25th September, 2018.

Link: Mayes_Whiteness_as_a_bioethical_problem_AABHL_2018

AABHL 2018



In March 2018 the Nursing and Midwifery Board of Australia (NMBA) released new editions of their codes of conduct, standards of practice, and code of ethics. In the glossary section, “cultural safety” was described (among other things) as providing “a de-colonising model of practice based on dialogue, communication, power sharing and negotiation, and the acknowledgment of white privilege”. Conservative media commentators reacted by claiming that white nurses were being asked to apologise for being white prior to caring for Aboriginal and Torres Strait Islander patients. Media personality Andrew Bolt called the code a new form of racism and Senator Corey Bernardi characterized the situation as a “new medical Marxism”. These responses serve to illustrate the sensitivity some sections of Australian society have to examining whiteness and white privilege in general, and health institutions in particular.

In recent years, whiteness studies has emerged as a way of examining race relations and the effects of racism by focusing on assumptions that “white” occupies a position of normalcy and neutrality. Black feminist scholars such as Audre Lourde have been significant in turning the critical focus from the racialised other to the institutions, beliefs, systems, and practices that do the work of racialising, while reinforcing white privilege. In Australia, this has meant that instead of focusing exclusively on the injustices suffered by Aboriginal and Torres Strait Islander peoples, the whiteness analytic lens allows scholars such as Irene Watson and Aileen Moreton-Robinson to draw attention to the material conditions, histories, ideas, and practices that make such racialised injustices possible, and even normal.

This paper explores the historical legacy and contemporary implications of whiteness in the provision of health care, health-related research, and bioethics itself to ask: If biomedicine and bioethics are implicated in the privileging of whiteness, is it possible to begin a process of decolonisation and move towards a postcolonial bioethics?

It is not our genetics but it is your lifestyle

Gene therapy is the great promise continually reported in the media as ‘just around the corner’ and that ‘soon’ our family physician will “be able to tailor drugs to a patient’s genetic profile.”[1] While gene therapy may eventually deliver on these promises the current situation is that they have not.

The absence of effective genetic therapies is acutely evident in the areas where genetic technology has been most successful in isolating specific genes associated with particular diseases. In such cases a clear and powerful diagnosis is possible. Yet the equivalent precision and power is lacking in therapeutics. Thus a healthy woman with no symptoms can be diagnosed as carrying the BRCA1 genetic mutation, which translates as having an “80% risk of being diagnosed with breast cancer”.[2] Having been exposed to this devastating information through the precision of genetic diagnostics the therapeutic options are surprisingly limited: more frequent screening or hormonal therapy. A third option, arguably the most effective[3], is prophylactic mastectomy.[4] This is an extremely aggressive procedure first performed around 550AD. Thus through advances in genetic diagnosis we are placed in an embarrassing and tragic situation in which we can ‘know the future’ using technologies inconceivable to scientists a generation ago, yet the therapeutic response is a brutal surgical method first performed over fifteen hundred years ago.

I contend that although there is often animosity between public health and biomedicine, the (as yet) lack of effective genetic therapies for diseases arising due to a known genetic mutation has resulted in a re-emphasis on public health strategies, and particularly individual lifestyles, as both a therapeutic and preventive response. Writing in 1992 Richard Lewontin notes the difficulties in translating genetic knowledge to effective therapies, yet he argues that this difficulty “does not discourage the advocates of the Human Genome Project because their vision of therapy includes gene therapy.”[5] Here Lewontin touches on the mono-casual theory of disease stemming from Louis Pasteur, that a single gene is responsible for the manifestation of particular disease or behaviour. In questioning whether the mapping of the human genome will revolutionize medicine Holtzman and Marteau counsel that “medical and science policies in the next decade would do well to see beyond the hype” as “social structure, lifestyle, and environment account for much larger proportions of disease than genetic differences.”[7]

In the decades following the HGP a general skepticism rose around ideas of genetic determinism, being replaced with epigenetic theories and debate surrounding the efficacy of gene therapy.Not only has there been an emphasis on the interaction between genes, the environment and lifestyle in determining disease, but as Petersen and Bunton observe the therapeutic role of genetic technology is increasingly being re-framed as providing ‘empowering’ information enabling individual’s to make “the most appropriate choice about health and life-style.”[8] For example, Breastcancer.org advises women diagnosed with a genetic mutation associated with breast or ovarian cancer of “lifestyle choices you can make to keep your risk as low it can be”[9]. Such choices include maintaining a healthy weight, nutritious eating, exercise, limiting alcohol consumption and never smoking.

I am not suggesting that research into genetic therapy has been useless or that it should be abandoned. Rather the interventions into the biological life and health of individuals and populations following the HGP and development of genetic technologies have redeployed genetic knowledge to inform individual lifestyle choices. Thus rather than providing therapies to improve lived experience, these technologies further disrupt and undermine lived experience by bring a future into the present that requires a modification of the present for the sake of the future.

[1] Holtzman, N. A., & Marteau, T. M. (2000). Will Genetics Revolutionize Medicine? New England Journal of Medicine, 343(2), 141-144. doi: doi:10.1056/NEJM200007133430213. (p. 141)

[2] Breastcancer.org. (2011). Breastcancer.org  Retrieved 4/4/2011, from http://www.breastcancer.org/risk/factors/genetics.jsp

[3] Hartmann, L. C., Sellers, T. A., Schaid, D. J., Frank, T. S., Soderberg, C. L., Sitta, D. L., . . . Jenkins, R. B. (2001). Efficacy of Bilateral Prophylactic Mastectomy in BRCA1 and BRCA2 Gene Mutation Carriers. Journal of the National Cancer Institute, 93(21), 1633-1637. doi: 10.1093/jnci/93.21.1633

[4] Also prophylactic ovary removal

[5] Lewontin, R. C. (1992). Biology as Ideology: The Doctrine of DNA. New York: Harper Perennial. (p. 69)

[8] Petersen, A., & Bunton, R. (2002). The New Genetics and the Public’s Health. London: Routledge. (p. 6)