The use of human tissue raises ethical issues of great concern to health care professionals, biomedical researchers, ethics committees, tissue banks and policy makers because of the heightened importance given to informed consent and patient autonomy. The debate has been intensified by high profile scandals such as the “baby hearts” debacle and revelations about the retention of human brains in neuropathology laboratories worldwide. Respect for patient’s rights seems, however, to impede research and development of clinical knowledge in contemporary health care. (...) The Common clinical endeavour argument and a Presumption for beneficial use argument suggest that the use of tissues for research and teaching in contemporary health care can respect patients and their values in multicultural communities where there are provisions for oversight and for opting not to contribute, both of which should respect the diverse views of different ethnic or cultural groups. (shrink)

Empirical-ethical research constitutes a relatively new field which integrates socio-empirical research and normative analysis. As direct inferences from descriptive data to normative conclusions are problematic, an ethical framework is needed to determine the relevance of the empirical data for normative argument. While issues of normative-empirical collaboration and questions of empirical methodology have been widely discussed in the literature, the normative methodology of empirical-ethical research has seldom been addressed. Based on our own research experience, we discuss one aspect of this normative (...) methodology, namely the selection of an ethical theory serving as a background for empirical-ethical research. (shrink)

This article presents various developments in Dutch health care policy toward a greater role for individual financial responsibility, such as cost-control measures, priority setting, rationing, and market reform. Instead of the collective responsibility that is characteristic of previous times, one can observe in government policies an increased emphasis on the need for individuals to take care of one’s own health and health care needs. Moreover, surveys point to decreasing levels of public support for “unlimited” solidarity and “irresponsible” health behavior. This (...) article attempts to answer the question of how these policies and public attitudes are limiting the ethical principles of solidarity and equal access to care that have long guided Dutch health care policy making. The authors argue that from a moral point of view, the increased emphasis on individual responsibility is acceptable as long as it does not affect solidarity with those weak and vulnerable groups who are not able to take individual responsibility, such as the demented and mentally handicapped. (shrink)

Resource allocation decisions are often made on the basis of clinical and cost effectiveness at the expense of ethical inquiry into what is acceptable. This paper proposes that a more compassionate model of resource allocation would be achieved through integrating ethical awareness with clinical, financial and legal input. Where a publicly-funded healthcare system is involved, it is suggested that having an agency that focuses solely on cost-effectiveness leaving medical, legal and ethical considerations to others would help depoliticise rationing decisions and (...) command greater public acceptance. (shrink)

Euripides’ Alcestis (1959) raises the issue of ethical duties within families and exposes the romantic postures and rhetoric that can dominate such discussions. Should anybody be asked to sacrifice themselves or even undergo significant health risks for members of their own family? (An issue that is also relevant in considering our duties to future generations in terms of the earth we leave to them.) The issue that is dramatized to a heroic level in Alcestis arises in live organ and tissue (...) donation within a family and challenges the idea that families should be trusted to sort out solutions that they can all live with. Alcestis intensifies the debate because the sacrifice of one life for another is its topic but, in doing so, it exposes many traps lying in wait for ethicists and medical jurists who boldly enter such debates (where emotions create shifting ground on which angels fear to tread). (shrink)

Walter Freeman, the self styled neurosurgeon, became famous (or infamous) for psychosurgery. The operation of frontal leucotomy swept through the world (with Freeman himself performing something like 18,000 cases) but it has tainted the whole idea of psychosurgery down to the present era. Modes of psychosurgery such as Deep Brain Stimulation and other highly selective neurosurgical procedures for neurological and psychiatric conditions are in ever-increasing use in current practice. The new, more exciting techniques are based in a widely held philosophical (...) position on the relationship between the mind, brain and soul, which is the key to ethical debates in this area. Psychosurgery has always posed questions of responsibility, personality, character, identity, spirit, relationship, integrity, and human flourishing and they do not go away when we enter the brave new world of neuroethics and Deep Brain Stimulation. (shrink)

Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased (...) tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. (shrink)

J. S. Mill’s case against censorship rests on a conception of relevant communications as truth apt. If the communication is true, everyone benefits from the opportunity to exchange error for truth. If it is false, we benefit from the livelier impression truth makes when it collides with error. This classical liberal model is not however adequate for today’s world. In particular, it is inadequate for dealing with the problem of stereotyping. Much contemporary communication is not truth apt. Advertising and journalism, (...) film and fashion portray images that can be neither verified nor refuted. Moreover, where these images do bear some relation to reality, any truth they may possess is not necessarily beneficial. Cultural stereotypes, for example, can be harmful even when true, to the extent that they reflect a distorted reality (the realities of life under conditions of injustice and exploitation). Exposure to such stereotypes affects a community’s self-conception. The resulting harms may be direct or indirect. Indirect harm is done when a stereotype affects a community’s capacity for self-determination, perpetuating existing inequalities by restricting the options its members understand to be available to them. Direct harm is done when a stereotype induces a distorted self-conception. Pace Kant, human dignity is not purely a function of our capacity to be authors of a universal moral law. It also resides in our capacity to achieve an undistorted self-conception. Thus true communications that reflect a distorted historical reality may threaten our dignity, through their effects on our self-conception, independent of any consequences they may have for self-determining action. (shrink)

The concept of futility is sometimes regarded as a cloak for medical paternalism in that it rolls together medical and value judgments. Often, despite attempts to disambiguate the concept, that is true and it can be applied in such a way as to marginalize the real interests of a patient. I suggest we replace it with a conceptual toolkit that includes physiological futility, substantial benefit (SB), and the risk of unacceptable badness (RUB) in that these concepts allow us to articulate (...) what is at stake in ethical judgments where outcomes are crucial in determining what should be done. (shrink)