Medicine, Health Care and Philosophy

, Volume 6, Issue 1, pp 45–50 | Cite as

Bioethical theory and practice in genetic screening for type 1 diabetes

  • U. Gustafsson Stolt
  • J. Ludvigsson
  • P.-E. Liss
  • T. Svensson


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.

bioethics diabetes prevention screening 


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  1. Beskow, L.M., W. Burke, J.F. Merz et al.: 2001, ‘Informed Consent for Population-based Research Involving Genetics’, JAMA 286, 2315-2321.Google Scholar
  2. Beauchamp, T.L. and J.F. Childress: 1994, Principles of Biomedical Ethics, 4th edn. New York: Oxford University Press.Google Scholar
  3. Chadwick, R., M. Levitt and D. Shickle (eds.): 1997, The Right to Know and the Right not to Know. Avebury, Aldershot.Google Scholar
  4. Chadwick, R., D. Shickle, H. ten Have and U. Wiesing (eds.): 1999, The Ethics of Genetic Screening. Dordrecht: Kluwer Academic Publishers.Google Scholar
  5. Chadwick, R.F. and A.K. Thompson (eds.): 1999, Genetic Information. Acquisition, Access, and Control. New York: Kluwer Academic/Plenum Publishers.Google Scholar
  6. Clarke, A. and F. Flinter: 1996, ‘The Genetic Testing of Children: A Clinical Perspective’ in: T.M. Marteau and M.P.M. Richards (eds.). The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press.Google Scholar
  7. Clarke, A. (ed.): 1998, The Genetic Testing of Children. Oxford: Bios Scientific Publishers.Google Scholar
  8. Clarke, A.: 1999, ‘The Genetic Testing of Children’, in: R. Chadwick et al. (eds.), The Ethics of Genetic Screening. Dordrecht: Kluwer Academic Publishers.Google Scholar
  9. Coughlin, S. and T. Beauchamp (eds.): 1996, Ethics and Epidemiology. Oxford: Oxford University Press.Google Scholar
  10. Emanuel, E.J., D. Wendler and C. Grady: 2000, ‘What Makes Clinical Research Ethical?’ JAMA 283(20), 2701-2711.Google Scholar
  11. Faden, R.R. and T.L. Beauchamp: 1986, A History and Theory of Informed Consent. New York: Oxford University Press.Google Scholar
  12. Gale, E.A.: 1996, ‘Nicotinamide: Potential for the Prevention of Type 1 Diabetes?’ Horm. Metabol. Res. 28, 361-364.Google Scholar
  13. Gustafsson Stolt U., P-E. Liss, T. Svensson and J. Ludvigsson: 2002. ‘Attitudes to Bioethical Issues: A Case Study of a Screening Project’, Social Science and Medicine 54(9), 1333-1344.Google Scholar
  14. Hermerén, G.: 1999, ‘Neonatal Screening: Ethical Aspects’, Acta Paediatrica Supplement 432, 99-103.Google Scholar
  15. Holtzman, N.A., P.D. Murphy, M.S. Watson and P.A. Barr: 1997, ‘Predictive Genetic Testing: From Basic Research to Clinical Practice’, Science 278, 602-605.Google Scholar
  16. Levitt, M.A.: 1999, ‘A Sociological Perspective on Genetic Screening’, in: R. Chadwick et al. (eds.), The Ethics of Genetic Screening. Dordrecht: Kluwer Academic Publishers.Google Scholar
  17. Ludvigsson, J., U. Gustafsson Stolt, P-E. Liss and T. Svensson for the ABIS study group: 2002, ‘Mothers of Children in ABIS (All Babies in South-east of Sweden experience few Ethical Conflicts, and Have a Positive Attitude’, Annals of The New York Academy of Sciences 958, 376-382.Google Scholar
  18. Ludvigsson, J.: 1993, ‘Ethical Aspects on Clinical Studies of Prediabetes’, Pediatric Adolescence Endocrinology, 23.Google Scholar
  19. Marteau, T.M. and M.P.M. Richards (eds.): 1996, The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge: Cambridge University Press.Google Scholar
  20. Marteau, T.M. and R.T. Croyle.: 1998, ‘Psychological Responses to Genetic Testing’, British Medical Journal 316, 693-696.Google Scholar
  21. Marteau, T.M. and C. Lerman: 2001, ‘Genetic Risk and Behavioural Charge’, British Medical Journal 332, 1056-1059.Google Scholar
  22. Michie, S., M. Bobrow and T.M. Marteau: 2001, ‘Predictive Genetic Testing in Children and Adults: A Study of Emotional Impact’, Journal of Medical Genetics 38, 519-526.Google Scholar
  23. Moreno, J., A.L. Caplan and P.R. Wolpe and the members of the project on informed consent Human Research Ethics Group: 1998, ‘Updating Protections for Human Subjects Involved in Research’, JAMA 280(22), 1951-1958.Google Scholar
  24. Mumford, S.E.: 1999a, ‘Children of the 90s: Ethical Guidance for a Longitudinal study’, Archives of Diseases in Childhood Neonatal Edition 81, 146-151.Google Scholar
  25. Mumford, S.E.: 1999b, ‘Children of the 90s II: Challenges for the Ethics and Law Committee’, Archives of Diseases in Childhood Neonatal Edition 81(3), 228-231.Google Scholar
  26. Nordenfelt, L.: 1996, ‘Prevention and Ethics in Medicine: The Case of Diabetes Prevention’, Journal of Paediatric Endocrinological Metabolism 9, 381-386.Google Scholar
  27. Reilly, P.R., M.F. Boshar and S.H. Holtzman: 1997, ‘Ethical Issues in Genetic Research: Disclosure and Informed Consent’, Nature Genetics 15, 16-20.Google Scholar
  28. Ross, L.F. and R.M. Veatch: 1997, ‘Consent for Clinical Research’, New England Journal of Medicine 337, 282-283.Google Scholar

Copyright information

© Kluwer Academic Publishers 2003

Authors and Affiliations

  • U. Gustafsson Stolt
    • 1
  • J. Ludvigsson
    • 1
  • P.-E. Liss
    • 2
  • T. Svensson
    • 3
  1. 1.Department of Molecular and Clinical Medicine, Division of Paediatrics, Faculty of Health SciencesLinköping UniversityLinkopingSweden
  2. 2.Department of Health and SocietyLinköping UniversityLinköpingSweden
  3. 3.Department of Behavioural SciencesLinköping UniversityLinköpingSweden

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