In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (+info)
Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions.
The first part of this paper examines the practice of informed treatment decisions in the protective medical system in China today. The second part examines how health care professionals in China perceive and carry out their responsibilities when relaying information to vulnerable patients, based on the findings of an empirical study that I had undertaken to examine the moral experience of nurses in practice situations. In the Chinese medical ethics tradition, refinement [jing] in skills and sincerity [cheng] in relating to patients are two cardinal virtues that health care professionals are required to possess. This notion of absolute sincerity carries a strong sense of parental protectiveness. The empirical findings reveal that most nurses are ambivalent about telling the truth to patients. Truth-telling would become an insincere act if a patient were to lose hope and confidence in life after learning of his or her disease. In this system of protective medical care, it is arguable as to whose interests are being protected: the patient, the family or the hospital. I would suggest that the interests of the hospital and the family members who legitimately represent the patient's interests are being honoured, but at the expense of the patient's right to know. (+info)
Ancient Chinese medical ethics and the four principles of biomedical ethics.
The four principles approach to biomedical ethics (4PBE) has, since the 1970s, been increasingly developed as a universal bioethics method. Despite its wide acceptance and popularity, the 4PBE has received many challenges to its cross-cultural plausibility. This paper first specifies the principles and characteristics of ancient Chinese medical ethics (ACME), then makes a comparison between ACME and the 4PBE with a view to testing out the 4PBE's cross-cultural plausibility when applied to one particular but very extensive and prominent cultural context. The result shows that the concepts of respect for autonomy, non-maleficence, beneficence and justice are clearly identifiable in ACME. Yet, being influenced by certain socio-cultural factors, those applying the 4PBE in Chinese society may tend to adopt a "beneficence-oriented", rather than an "autonomy-oriented" approach, which, in general, is dissimilar to the practice of contemporary Western bioethics, where "autonomy often triumphs". (+info)
Towards a feasible model for shared decision making: focus group study with general practice registrars.
OBJECTIVES: To explore the views of general practice registrars about involving patients in decisions and to assess the feasibility of using the shared decision making model by means of simulated general practice consultations. DESIGN: Qualitative study based on focus group interviews. SETTING: General practice vocational training schemes in south Wales. PARTICIPANTS: 39 general practice registrars and eight course organisers (acting as observers) attended four sessions; three simulated patients attended each time. METHOD: After an introduction to the principles and suggested stages of shared decision making the registrars conducted and observed a series of consultations about choices of treatment with simulated patients using verbal, numerical, and graphical data formats. Reactions were elicited by using focus group interviews after each consultation and content analysis undertaken. RESULTS: Registrars in general practice report not being trained in the skills required to involve patients in clinical decisions. They had a wide range of opinions about "involving patients in decisions," ranging from protective paternalism ("doctor knows best"), through enlightened self interest (lightening the load), to the potential rewards of a more egalitarian relationship with patients. The work points to three contextual precursors for the process: the availability of reliable information, appropriate timing of the decision making process, and the readiness of patients to accept an active role in their own management. CONCLUSIONS: Sharing decisions entails sharing the uncertainties about the outcomes of medical processes and involves exposing the fact that data are often unavailable or not known; this can cause anxiety to both patient and clinician. Movement towards further patient involvement will depend on both the skills and the attitudes of professionals, and this work shows the steps that need to be taken if further progress is to be made in this direction. (+info)
Human rights is a US problem, too: the case of women and HIV.
Overall, US AIDS incidence and mortality have shown significant declines since 1996, probably because of new antiviral therapies. For women, however, these benefits have been much less pronounced than for men. At the heart of women's HIV risk is gender-based discrimination, which keeps women, and especially women of color, poor and dependent. Although human rights issues are often linked with AIDS issues abroad, in the US they receive insufficient attention in our response to women's HIV risk. Advocacy from public health professionals is needed to overcome the longstanding paternalistic attitudes of federal agencies toward women and to change the paradigm of women's HIV/AIDS prevention and care. Examples of unjust and punitive social policies that may affect women's HIV risk include the 1996 welfare policy legislation, drug treatment policies for women, and women's access to medical research and technology. The overriding public health response to AIDS consists of behavioral interventions aimed at the individual. But this approach will not successfully address the issues of women with AIDS until efforts are made to eliminate society's unjust and unhealthy laws, policies, and practicles. (+info)
The milk and the honey: ethics of artificial nutrition and hydration of the elderly on the other side of Europe.
Many health problems that elderly people face today relate not only to the nature of their affliction but also to the kind of treatment required. Such treatment often includes artificial nutrition and hydration, (ANH) a procedure which, despite its technical and invasive character, is still considered to be vested with symbolic meanings. It is precisely during the efforts to reach a legal consensus that the discrepancies between various cultural contexts become obvious. The following case explores the Greek clinical territory in comparison with the international situation, and the reasons why, in Greece, the right to refuse treatment is not necessarily interpreted as including the right to refuse artificial nutrition and hydration as well. (+info)
Autonomy, liberalism and advance care planning.
The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (+info)
Pregnancy, autonomy and paternalism.
Modern medicine is increasingly aware of the significance of patient autonomy in making treatment choices. This would seem to be particularly important where the therapy requested was "voluntary" as in fertility treatment or cosmetic surgery. However, the Hippocratic doctrine "Primum non nocere", seems especially relevant where the treatment sought may have a low chance of a successful outcome or even be life-threatening. Mrs A's case demonstrates the difficulty faced by the physician who wants to maximise her patient's autonomy, but "Above all, do no harm". (+info)