First, reference to the good life might convey the impression that Ricœur’s ethics is simply about virtues and care ethics. Care takes into consideration patients’ voices and desires, but usually conflicts with a depersonalised public health orientation. Although his approach has some points in common with care ethics, Ricœur does not reduce justice to friendship and equal consideration for others (Van Stichel ). He justifies the teleological aspect of justice by a passage through the norms of distributive justice and the political social contract. His ethical approach favours the concept of common good, rejection of injustice, and solicitude/love within the philosophical domain.
In the matrix, the ethical reflection path for big data relies on the concept of justice developed in the three columns of applied posterior ethics, moral norms and anterior ethics. The sense of justice is the key element as it supports sharing, i.e. making available the sources, algorithms and results of big data, as well as repairing when findings have harmed people. The corresponding principles of social justice and the equitable dissemination of knowledge will favour a bottom-up “democratic” participation around the governance of big data. Therefore, citizen education and participation would protect patients and health providers from uncontrolled fears leading to an unreasonable principle of precaution, as well as from potential hidden coercion of public health or absence of prudence in the use or commercialization of big data. Such a democratic management of health big data could enhance the ethical reflection of HCS, increasing their self-esteem and agency, and reduce the risk of medical or public arbitrariness.
Conceptualizing and measuring access to care is more complex a taskthan it might seem at first. In part, this is because health care isnon-homogeneous in its function, for it does quite different thingsfor us. In addition, there is disagreement about the nature of healthcare as a social good: some think it is just a commodity, to bepurchased in a market like other commodities; others claim it has aspecial moral importance that distinguishes it from some other marketgoods. If we are to make sense out of claims that we owe each otherequal or at least equitable access to care, and this means we mustovercome various barriers to access to care that create inequitableaccess, then we need to be clear how to determine when access isunequal or unjustifiably unequal.
For our purposes, however, the lesson to be drawn from the literatureon the social determinants of population health is that we cannotexpect health inequalities to disappear solely as a result ofproviding universal access to care. Health care is not the onlysocially controllable factor affecting population health and itsdistribution. This leaves us with a question we shall have to address:if other factors besides health care are important determinants ofhealth, then is the focus on providing universal access to health caremisplaced? Even if justice requires us to promote or protect health,does it require us to do so through the provision of access to healthcare, or should we now modify our view of the importance of healthcare in light of what we have learned from social epidemiology? Wereturn to address this issue in Sections 3 and 4.
It is tempting to think that we can give a completelynon-controversial definition of equal access to health care—muchas we can do for equality of income—and reserve all controversyfor debates about which departures from equality conform to acceptableprinciples of justice. If A earns $10,000 less thanB, the inequality might be thought equitable by some if Bworks longer or harder than A, by others ifB’s skills have a higher market value thanA’s, and by others if B needs more thanA does. Here our moral disagreements about appropriatedistributive principles show up as disagreements about just orequitable income distribution, though there is no controversy aboutwhether incomes are equal.
We might seek guidance from how some societies assure access to care,keeping in mind that what societies actually do may not coincide withwhat they should do as a matter of justice. If, however, there iswidespread belief that people owe each other access to certain kindsof care, and this belief is embodied in institutions that attempt todo that, it may give us some evidence about what people think they oweeach other. Of course, we find different institutional provisions ofaccess in different settings, and the differences may not reflectdifferences in belief as much as differences in resources or socialhistory.
It might be thought that the provision of universal access to a rangeof public health and personal medical services would go a long waytoward reducing health inequalities among different social groups,whether ethnic or divided by socio-economic status. But, carefulstudies in many countries, most dramatically in the United Kingdom,have shown that health inequalities by class have not been reduced bythe presence of universal coverage through the British National HealthService (Marmot 2004). Two longitudinal studies of British civilservants, known as the Whitehall Studies, have shown a pronouncedsocio-economic gradient of health across different categories ofworkers: the higher a worker’s occupational status, the longerand healthier her life. In addition, this difference is not explainedby risk factors associated with occupational status, such as smokingrates or lipid levels or other “lifestyle choices.” Nor isthe gradient simply a result of “deprivation”—fornone of the civil servants are poor, lack basic education, or medicalcare—and the gradient is present across all occupationallevels.
Yet, when patients or healthcare professionals are exposed to multiple HIM situations, they may be subject to conflicting moral recommendations. It is still unclear how to address ethical issues, given the broad spectrum of data covered by health information management. The standard biomedical ethical frameworks are usually targeted to a limited domain: clinical care, research or public health. The management of health information thus requires an accommodating normative ethical basis. It is possible to combine several moral theories in order to cover the entirety of the HIM field, analogous to the model of reflective equilibrium defended by Rawls () and Daniels (). But this approach has been criticised, first, on the grounds that it is difficult to access and put into practice (Beauchamp ) and, second, because in this model each framework risks losing its distinctiveness and its specific moral justification (Arras , p. 67). Moreover, combining parts of different ethical frameworks to fit the entire scope of health information compromises the coherence of the underlying ethical theory. Therefore, there is need for a more comprehensive overarching model for ethical management of health information.
The Whitehall results are very robust and reveal a strong gradient ofhealth across a wide range of morbidity and mortality measures. Theyare also consistent with findings found in many countries, both withand without universal coverage. All these findings show a strongimpact of non-health care determinants of health: income and wealth,education, inclusion and exclusion, including discrimination againstwomen and L.G. B. T. groups, social cohesiveness, and others. Animportant focus of research is to explain the mechanisms that might beat work in creating these health inequalities. The WHO Commission onthe Social Determinants of Health issued a final report in 2008 thatcalled for various policy measures that improve daily livingconditions and distribute more equitably money, power, and resources,as well as research aimed at better measuring the influence of thesefactors and evaluating the impact of measures to redistribute thesedeterminants of health more fairly (CSDH 2008).
The work on disability that I am now doing is a manuscript tentatively entitled “Disabled Minds and Things That Matter: Lessons Toward a Humbler Philosophy.” In this work I am pulling together the themes that have emerged in my essays as I have confront traditional philosophical thought with the fact of cognitively disabled individuals. My thinking here is grounded in an ethics of care. Questions such as the dignity of people with cognitive impairments, the personhood of people with severe cognitive disability and justice toward the cognitively disabled on the role of care in human social life and in creating us as the relational beings we are ones that I treat using an ethics of care.
Consider next the modified market view, according to which we haveequity of access to health care when a decent minimum is available toall in a market. Unlike the utilization rate approach, the market viewis not really a position represented in the empirical literature onaccess but rather a composite abstracted from views that are common inthe economics and health planning literature. Its interest lies in thequite different limits it places on the notion of equitable access andbecause of the quite different underlying view of health care anddistributive justice.