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Biomedical subjects

P E Liss

Publications and source records attributed to P E Liss.

6 recordsLinked to original sources
PubMed2003

Bioethical theory and practice in genetic screening for type 1 diabetes.

Due to the potential ethical and psychological implications of screening, and especially in regard 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 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 the ethical criteria of autonomy and respect, were emphasised by our respondents. We believe the issues brought up may promote further discussion, and do suggest issues for consideration by, among others, researchers, bioethicists and Institutional Review Boards.

Adult↗
PubMed2002

Attitudes to bioethical issues: a case study of a screening project.

Commonly expressed in theoretical discussions about ethical problems in the context of epidemiology and screening is the need for more data. A study was carried out involving 21 explorative interviews with participant and nonparticipant mothers in a neonatal research screening project in progress in Sweden, ABIS (All Babies in Southeast Sweden). The respondents were asked, by way of open-ended questions, to give their opinions about certain ethical issues: informed consent; reasons for joining/declining; surrogate decision; the collection, analysis and storage of written and "live" material (biobanks); intervention etc. The ethical implications mentioned in the literature mostly concern the risk of creating distress and anxiety (anxiety and possible stigmatisation in respect of positive or false-positive results, worry about material collected and stored, distress caused by blood sampling procedures, etc.). Our results do not support the idea that the risks are substantial. The respondents rather indicate an attitude of benevolence--they are positive both to the current research on children, to the material they contribute (both written material and "biomaterial"), to possible results and intervention plans. On the other hand the participants expressed concern about the storage of material and the right to be informed of any screening/project results. Further studies in this field are needed and would be of help in theoretical discussion, the work of ethical committees and the designing of, for example, screening and research projects.

Anxiety↗
PubMed1999

Access to health care in the Scandinavian countries: ethical aspects.

The health care systems are fairly similar in the Scandinavian countries. The exact details vary, but in all three countries the system is almost exclusively publicly funded through taxation, and most (or all) hospitals are also publicly owned and managed. The countries also have a fairly strong primary care sector (even though it varies between the countries), with family physicians to various degrees acting as gatekeepers to specialist services. In Denmark most of the GP services are free. For the patient in Norway and Sweden there are out-of-pocket co-payments for GP consultations, with upper limits, but consultations for children are free. Hospital treatment is free in Denmark while the other countries use a system with out-of-pocket co-payment. There is a very strong public commitment to access to high quality health care for all. Solidarity and equality form the ideological basis for the Scandinavian welfare state. Means testing, for instance, has been widely rejected in the Scandinavian countries on the grounds that public services should not stigmatise any particular group. Solidarity also means devoting special consideration to the needs of those who have less chance than others of making their voices heard or exercising their rights. Issues of limited access are now, however, challenging the thinking about a health care system based on solidarity.

Delivery of Health Care↗