Negotiating Care in Uncertain Settings and Looking Beneath the Surface of Health Governance Projects

Abstract

Two intersecting trends in healthcare related to thebiopolitics of responsibility have been noted by med-ical anthropologists: increasing health governance en-abled by audit culture, and the holding of individualsmore accountable for their health in concert with theprinciples of neoliberalism and ready access to a pro-liferation of information sources. On the one hand,governments have continued to exercise governancein areas of health that fit political and economicagenda. Two good examples of the latter trend arebio-nationalism projects such as Japan’s insistencethat Japanese bodies are unique and that clinical trialsbe conducted on commensurate bodies in order fordrugs to be approved for use by the Japanese popu-lation (Kelly and Nichter 2012) and Erten’s article inthis volume on the biopolitics of Caesarean-sectiondeliveries in Turkey. In Turkey, recent limitationsplaced on high rates of Caesarean sections, and statemonitoring of child birth, have less to do with therisks of the procedure and the best interests ofwomen, and more to do with the State’s pronatalistagenda and desire for each woman to have four chil-dren, more children than Caesareans safely allow.The other trend is characterised by health citizenshipwhere the public is asked to be more proactive in pro-moting health and preventing disease, and patientsare increasingly being asked to take on more respon-sibility and participate more actively in healthcare de-cision-making. This is occurring at a time whenregulation of the healthcare market is being debatedas well as manipulated such that health ‘goods’,‘bads’ and ‘fads’ abound. In today’s ‘risk society’marked by crises of trust and reflexive modernisation(Beck 1992) as well as a lucrative harm-reduction in-dustry that thrives on chronic doubt, ‘buyer beware’is replacing ‘blind trust’ in healthcare providers, hos-pitals, insurance companies and agencies responsiblefor protecting the health of the public. Citizens are in-creasingly expected to become informed agents exer-cising reasonable judgement and freedom of choice(Briggs and Hallin 2007; Lindsay and Vrijhoef 2009;Rogers 2009). Needless to say, this is a Herculean taskgiven the rapid rate of scientific advances, highly pub-licised promises of medical breakthroughs that oftendo not materialise, rampant disinformation and con-flicts of expert opinion. This has led members of thepublic to search for information filters which they cantrust, be these personal networks, expert bodies orfavourite news outlets.Once thought of as powerless and subject to pater-nalistic medicine, patients are being reconfigured asboth partners in healthcare decision-making and aspossessors of biovalue in the form of genetic material,body parts and disease experience in local and globalmedical marketplaces. Okamoto’s article in this issuereviews stages through which a shared decision-making model of doctor–patient has emerged and an emphasis on patient compliance has shifted to adher-ence and concordance with negotiated care plans.Abdalla’s article draws our attention to yet anotheroutcome of patient participation in the healthcaremarket of Egypt. He expands the scope of biovalue toinclude patients’ sale of patient disease experience tomedical students who have limited opportunity togain this knowledge in Egyptian medical colleges.During medical school, real-world patient exposure islimited, and students are left to fend for themselves interms of gaining practical experience. Impoverishedpatients generate income for their daily survival bytrading in the biovalue of embodied knowledge oftheir health conditions for sale to medical students ata cost. On the one hand this seems like a mutually ad-