Due to the potential ethical and psychological implications of screening, and especially inregard of screening on children without available and acceptable therapeutic measures, there is a common view that such procedures are not advisable. As part of an independent research- and bioethical case study, our aim was therefore to explore and describe bioethical issues among a representative sample of participant families (n = 17,055 children) in the ABIS (All Babies In South-east Sweden) research screening for Type 1 diabetes (IDDM).The primary (...) aim is the identification of risk factors important for the development of diabetes and other multifactorial immune-mediated diseases. Four hundred, randomly chosen, participant mothers were asked to complete a questionnaire exploring issues of information, informed consent, bio-material, confidentiality and autonomy, and of prevention/intervention. 293 completed the questionnaire, resulting in a response rate of 73.3%. The majority of questions had the form of 6-point Likert-type response scales (1–6).We found that the majority of respondents felt calm in regard of samples and written material, and also concerning the possibility of their child in the future being identified as having high risk of developing Type 1 diabetes. An important finding concerning access and control of mainly biological data was indicated, with the respondents expressing concern for potential future use. We believe our findings indicate that this kind of empirical studies can substantially contribute to our understanding of bioethical issues of medical research involving genetics. Issues, such as safeguards ensuring theethical criteria of autonomy and respect, were emphasised by our respondents. We believe theissues brought up may promote further discussion, and do suggest issues for consideration by, among others, researchers, bioethicists and Institutional Review Boards. (shrink)

All scientific activity involves some method of observation and some method of recording what is observed. These activities can be carried out in ways that involve little interaction between subject and object, as is the case when a telescope observes a far-away star. At the other end of the scale are experiments in modern high energy physics in which there is little distinction between the observer and the observed, and the process of observation materially affects the data that are recorded. (...) In this regard, research on human phenomena resembles modern physics more than it does classical astronomy.Research on human phenomena, however, differs from modern physics in the way in which it affects that which is observed. Both the procedures and the findings of research on human phenomena alter the modes of thinking and the self-awareness of the objects of study. (shrink)

All scientific activity involves some method of observation and some method of recording what is observed. These activities can be carried out in ways that involve little interaction between subject and object, as is the case when a telescope observes a far-away star. At the other end of the scale are experiments in modern high energy physics in which there is little distinction between the observer and the observed, and the process of observation materially affects the data that are recorded. (...) In this regard, research on human phenomena resembles modern physics more than it does classical astronomy.Research on human phenomena, however, differs from modern physics in the way in which it affects that which is observed. Both the procedures and the findings of research on human phenomena alter the modes of thinking and the self-awareness of the objects of study. (shrink)

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by public health professionals in day-to-day practice and of the type (...) of ethics education and support they believe may be helpful. (shrink)

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by public health professionals in day-to-day practice and of the type (...) of ethics education and support they believe may be helpful. (shrink)

In the present study we analyze if the risk concept of the hegemonic epidemiologychanges its nature in purportedly alternative currents as ecoepidemiology and socialepidemiology focused in multilevel analysis.We analyze the way this concept is distinguishedin every current and its relationship with other epidemiologic key notions as cause. We findthat the risk concept and the notion of cause remain relatively unchanged among the differentcurrents even when there is some theoretical discussion about the complexity of multilevelsystems and other explanations for the events. (...) Finally we discuss some consequences aboutthe appropriation of the risk concept in multiple interventions in the health field. We indicatethat the fragmented nature of the risk concept is problematic because it can make thesocial aspects of the disease considered only in a functional perspective. Alternatively to thatwe develop the vulnerability concept as a knowledge framed in a hermeneutical perspective.The vulnerability concept acts as a mediator knowledge between epidemiology and theinterventions in the health field. In the same way we point out some concerns from the anthropologicalfield about the simplification of social senses and omission of meanings aboutthe health of the communities. (shrink)

This paper evaluates the content of the syllabi of postgraduate courses on public health ethics within accredited schools and programs of public health in the United States in order to gain an awareness of the topics addressed within these courses. Methods: Data was gathered via the analysis of syllabi of courses on PHE. In 2012, information was requested by e-mail from the 48 schools and 86 PH programs accredited by the U.S. Council on Education for Public Health for 2012. The (...) “Epidemiology and PHE Syllabi” project of the University of Miami also was consulted. A table of topics was drawn up in order to carry out content analysis of the documents. Results: Data was obtained from 25 schools and 36 accredited programs ; 36 syllabi were gathered and 75 different topics were found. Of these, 38 topics were addressed in six or more syllabi and can be grouped as follows: foundations of PHE; autonomy and its limits; infectious disease control; justice; research ethics; health education and promotion; environmental and occupational health; screening; genetics; privacy and confidentiality; and community-based practice and vulnerable populations. Conclusions: The analyzed syllabi show high variability in curricular content. The debate with regard to whether a core curriculum on PHE should be established is ongoing. The results of this work might be of interest for schools and programs of PH in other countries or regions of the world in order to develop or ameliorate their own PHE syllabi. (shrink)

There has been increasing interest in developing practical, non-theoretical tools for analyzing ethical problems in public health, biomedicine, and other scientific disciplines so that professionals can make and justify ethical decisions in their own research or practice. Tools for ethical decisionmaking, together with case studies on ethics, are often used in graduate education programs and in continuing professional education. Students can benefit from opportunities to further develop their analytical skills, to recognize ethical issues, and to develop their moral sensitivity. One (...) practical approach for illustrating and facilitating ethical analysis uses cases with contrary facts and circumstances, an approach which complements rather than replaces theoretical approaches to moral reasoning. Cases with contrary facts and circumstances are presented in two or more alternative ways so that the facts, circumstances, or framing of one version runs counter to that of the other version (s). Cases with contrary facts, together with practical steps for identifying and analyzing ethical issues, are likely to be useful tools for illustrating and facilitating ethics analysis and stimulating the moral imagination. (shrink)

Register-based research can provide important and valuable contributions to public health research, but involves ethical issues concerning the balance of public health benefits and individual autonomy. This study aimed to describe the opinions of the Finnish public about these issues.

The current scandal surrounds the global breast implant scare of silicone implants made by France's Poly Implant Prothese (PIP) Company. An ensuing review recognized that efforts in investigating the distress caused to so many women were hampered by a lack of reliable and comprehensive information about all the adverse incidents relating to PIP breast implants, as well as uncertainty about comparative data on similar products. One of the recommendations following the review was the investigation of the potential for re-establishing a (...) breast implant registry, which could facilitate the availability of adverse incident reporting in cases such as these. The insistence of compulsory inclusion in such registries would override the debate on informed consent in epidemiological studies and public health. The ethics of clinical research with its focus on individual consent is difficult to reconcile with the ethical requirements of research at a population level as in the case of registries. (shrink)