Against the principle that the individual shall have priority over science.

This paper highlights a feature common to many ethical guidelines--namely, the idea that the interests of the individual shall always prevail over the interests of science and society. The paper presents how some major ethical guidelines treat the balancing of research interests against those of research subjects and spells out the difficulties in interpreting the principle of the primacy of the individual in a way that can be action-guiding. It suggests various alternative interpretations of the primacy of the individual and argues that they do not hold.

From cure to palliation: concept, decision and acceptance.

The aim of this paper is to present and discuss nurses' and physicians' comments in a questionnaire relating to patients' transition from curative treatment to palliative care. The four-page questionnaire relating to experiences of and attitudes towards communication, decision-making, documentation and responsibility of nurses and physicians and towards the competence of patients was developed and sent to a random sample of 1672 nurses and physicians of 10 specialties. The response rate was 52% (n = 844), and over one-third made comments.

Limited relevance of the right not to know--reflections on a screening study.

The right not to know personal health-related information has been included in prominent human rights documents and subsequently in national legislation since the middle of the 1990s. Apart from situations where another life is at stake, the right not to know has in these documents been formulated as if it should have precedence over other interests. This article argues against giving the right not to know such a prominent position.

Notions of just health care at three Swedish hospitals.

This article investigates what notions of "just health care" are found at three Swedish hospitals among health care personnel and whether these notions are relevant to what priorities are actually made. Fieldwork at all three hospitals and 114 in-depth interviews were conducted. Data have been subject to conceptual and ethical analysis and categorisation.

Ethics takes time, but not that long.

Background: Time and communication are important aspects of the medical consultation. Physician behavior in real-life pediatric consultations in relation to ethical practice, such as informed consent (provision of information, understanding), respect for integrity and patient autonomy (decision-making), has not been subjected to thorough empirical investigation. Such investigations are important tools in developing sound ethical praxis.

Commentary: isolated stem cells--patentable as cultural artifacts?

This article argues that an isolated embryonic stem cell basically represents a cultural artifact that has no equivalent to cells of the embryo, and that it is likely that the isolation of adult stem cells has a similar consequence. An isolated stem cell could thus be distinguished as something other than the stem cell existing as part of a human body. Since isolation of stem cells implies modification, product patents should, where the results carry enough novelty, inventive step, and potential for industrial application, as a matter of principle be a viable option for patent authorities.

Combining efficiency and concerns about integrity when using human biobanks.

In the debate about human bio-sampling the interests of patients and other sample donors are believed to stand against the interests of scientists and of their freedom of research. Scientists want efficient access to and use of human biological samples. Patients and other donors of blood or tissue materials want protection of their integrity.

Insight in frontotemporal dementia: conceptual analysis and empirical evaluation of the consensus criterion "loss of insight" in frontotemporal dementia.

The objective of this study was to suggest a new formulation of the core research diagnostic consensus criterion "loss of insight" in frontotemporal dementia (FTD). Eight patients with FTD (diagnoses made by interviews, medical and neuropsychological examination, CT scan, and regional cerebral glucose metabolism measured by positron emission tomography (PET) participated in the study). The results indicated that insight was present in three out of eight patients, and that insight appears to be a heterogeneous concept.

From cure to palliation: staff communication, documentation, and transfer of patient.

In the transition from curative treatment to palliative care of a general end-of-life patient population, the internal communication of the acute care staff seems to be less than optimal. The communication had reference to the dialogue within the staff both before and after the decision to concentrate on palliative care, and possible transfer of the patient. This survey of Swedish nurses and physicians showed that most of 780 respondents wanted more internal communication, and a more individualized procedure of decision-making.

Children, longitudinal studies, and informed consent.

This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is shifted to issues concerning information and consent procedures in studies that include young children growing up to become autonomous persons while the project still runs.

How to handle informed consent in longitudinal studies when participants have a limited understanding of the study.

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge they lack.

Potential harms, anonymization, and the right to withdraw consent to biobank research.

This paper discusses the potential harms involved in biobank research and how ethical review, informed consent, withdrawals, and anonymization of samples should be handled in the light of these harms. There is less risk involved in biobank research than in human subject research; it should therefore be treated differently. In our view, anonymization should not be an automatically permissible response to requests for withdrawal.