liu.seSearch for publications in DiVA
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Mothers of children in ABIS, a population-based screening for prediabetes, experience few ethical conflicts and have a positive attitude
Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Molecular and Clinical Medicine, Pediatrics. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Department of Health and Society. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Behavioural Sciences, Sociology. Linköping University, Faculty of Health Sciences.
2002 (English)In: Annals of the New York Academy of Sciences, ISSN 0077-8923, E-ISSN 1749-6632, Vol. 958, 376-381 p.Article in journal (Refereed) Published
Abstract [en]

Screening is supposed to create less anxiety among first-degree relatives of diabetic patients where the risk of developing diabetes already is well known. It has also been argued that screening of a general child population should never be performed unless identified high-risk individuals can be offered intervention to prevent diabetes. However, the empirical data are scarce, especially regarding what opinions patients or their parents have of these matters/issues themselves. We have therefore tried to evaluate mothers' attitudes to and ethical views on participation in a research screening for prediabetes in an unselected birth cohort. All 21,700 mothers of children in southeast Sweden born between 1 October 1997 and 1 October 1999 were asked to participate in ABIS (All Babies in Southeast Sweden). They were given information about the design of the study and that HLA types and autoantibodies will be determined in order to predict diabetes, but that no prevention of diabetes will be offered unless future studies show effective methods. After informed consent, 78.6% of mothers let their babies participate (17,055 children) despite a quite laborious study protocol. Explorative in-depth semistructured interviews were performed in 21 mothers, of whom 15 were strategically selected to get as many various attitudes as possible and of whom 6 chose not to participate in ABIS. All interviewed mothers were positive to the ABIS project. We conclude that a well-designed screening program to detect individuals in the general population with high risk of developing diabetes does not evoke anxiety nor severe ethical conflicts.

Place, publisher, year, edition, pages
2002. Vol. 958, 376-381 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-26475DOI: 10.1111/j.1749-6632.2002.tb03007.xLocal ID: 11026OAI: oai:DiVA.org:liu-26475DiVA: diva2:247024
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
In thesis
1. Aspects in bioethics: Theory and practice in a preventive screening for type 1 diabetes
Open this publication in new window or tab >>Aspects in bioethics: Theory and practice in a preventive screening for type 1 diabetes
2003 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

From a clinical perspective, as well as societal and global, the present rapid increase in the number of people diagnosed with diabetes is a cause of great concern. Simultaneously, our understanding of the aetiology and pathogenesis of type 1 diabetes (IDDM) remain limited. As of now there are two main approaches to predict the risk of diabetes development: either before by assessing the genetic factors presumably involved, or after by a combination of immunological (IAA, la-2, GAD) and genetic typing. The problems are for example that only 10% of those that develop diabetes have a first-degree relative, and that only a proportion of those with a genetic susceptibility will eventually develop type 1 diabetes Theoretically, prevention of type 1 diabetes can be done at three different levels: primary, secondary and tertiary intervention. However, it is argued that more basic research is needed before effective and safe prevention of type 1 can be introduced. More effort is also needed to identify the environmental factors and potential triggers.

Screening for pre-diabetes belong to one of the two type of genetic testing and screening who are generally considered being ethically controversial: predictive, pre-symptomatic testing of children for disorders that do not usually (or where there are uncertainty in progression rate) manifest until adult life, and for which an effective intervention measure is not available. There are risks for creation of distress and anxiety, risks for false-positive results, risks of bypassing informed consent and stigmatisation in case of potential positive results. Discussed are also issues concerning the upholding of individual autonomy, confidentiality and integrity. Simultaneously, it has been argued that the ethical discussion is based on empirical premises that are not sufficiently studied, and that we furthermore lack empirical data.

Thematically this thesis belongs to the discipline of descriptive ethics. Our aim was to empirically explore and describe the attitudes and opinions of to, on the basis of the empirical results, point at and discuss issues of bioethical relevance. Our case was ABIS (All Babies In Southeast Sweden) an ongoing prospective longitudinal cohort study for the prediction and prevention of type 1 diabetes (n=17,005). The research design included both qualitative studies: interviews with participating and non-participating mothers, as well as health professionals involved, and a quantitative study: consisting of a designed questionnaire exploring bioethical issues.

The interview data indicate a positive attitude both to the ABIS aims and methods and there were less concern over research material, screening results, prevention than often assumed. However, there were concern expressed of issues concerning confidentiality, integrity and restrictions. The reasons for declining participation varied: not wanting their child put through frequent blood testing, fear of "experimentation". The interviews with the staff involved gave important data regarding information procedures and research design, for example the importance of identifying and informing all actors in research involving humans. The questionnaire data support at large earlier empirical findings: a benevolent attitude, less concern over biological samples and written material. Similar concerns were raised of confidentiality and integrity: material used to initial purposes, protection of identity, renewed consent. The majority wanted to know about high-risk status, even though no available intervention. Our interest in information and informed consent was renewed since participants showed a lack of knowledge/understanding regarding basic aims and methods. The problem of informed consent was discussed in the last two papers: the first focusing on the problem of obtaining informed consent, while the second explored potential alternatives of action if we have reason to believe the participants lack a sufficient understanding.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet, 2003. 74 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 763
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26653 (URN)11218 (Local ID)91-7373-520-5 (ISBN)11218 (Archive number)11218 (OAI)
Public defence
2003-01-10, Berzeliussalen, Hälsouniversitetet, Linköping, 13:00 (Swedish)
Opponent
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-09-24Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full text

Authority records BETA

Ludvigsson, JohnnyGustafsson Stolt, UlricaLiss, Per-ErikSvensson, Tommy

Search in DiVA

By author/editor
Ludvigsson, JohnnyGustafsson Stolt, UlricaLiss, Per-ErikSvensson, Tommy
By organisation
PediatricsFaculty of Health SciencesDepartment of Department of Health and SocietySociology
In the same journal
Annals of the New York Academy of Sciences
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 209 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • oxford
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf