Adolescents and Carrier Testing

Attitudes and Ethical Presuppositions
  • Kris Dierickx


The insight in human heredity has been accelerated by the human genome project. By charting human genetic material, the project has helped to identify, localize and clarify the structure of an increasing number of genes which play a role in the origin and development of disease. This is leading to improved techniques for diagnosing disease, above all those in which genetic factors play a part. From the actual results one can predict that in the near future it will be possible to detect many of the most frequent genetic diseases early in pregnancy and at any moment thereafter. As more genes are identified, there is growing pressure to broaden existing testing opportunities and screening programmes. These programmes are increasing both the number of available tests and the volume of genetic information they generate. The emergence of the biotechnology industry increases the likelihood that these findings will be rapidly translated into widely available test kits and diagnostic products. The potential for generating all of this genetic information about individuals raises serious questions of informed consent, confidentiality and discrimination. Numerous factors effect the eventual use of genetic tests, not in the least the value of the test, the price, and the precision. Overshadowing these factors however, may be the attitude of the people towards genetic testing. How will they perceive such tests? How will they view and evaluate the implications?


Cystic Fibrosis Carrier Status Carrier Screening Carrier Testing Family Planning Clinic 
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  1. Andrews, L.B., Fullarton, J.E., Holtzman, N.A. & Motulsky, A.G. (ed.) (1994), Assessing genetic risks. Implications for health and social policy, National Academy Press, Washington D.C.Google Scholar
  2. Bianco, I., Graziani, B. & Lerone, M. (1985), ‘Prevention of thalassaemia major in Latium Italy’, Lancet, Vol. ii, pp. 888–889.CrossRefGoogle Scholar
  3. Brock, D.J.H. (1995), ‘Heterozygote screening for cystic fibrosis’, European journal of human genetics Vol. 3, pp. 2–13.PubMedGoogle Scholar
  4. Cobb, E., Holloway, S. Elton, R. & Raeburn, J.A. (1991), ‘What do young people think about screening for cystic fibrosis?’, Journal of medical genetics, Vol. 28, pp. 322–324.PubMedCrossRefGoogle Scholar
  5. Council of Europe (1992), Recommendation on genetic testing and screening for health care purposes, No. R (92) 3, Strasbourg.Google Scholar
  6. Cuppens, H. (1997), Mucoviscidose [Cystic Fibrosis], in XXX, Preventieve gezondheidszorg [Preventive health care], Kluwer, Diegem, pp. 720–725.Google Scholar
  7. Danish Council of Ethics (1993), Ethics and mapping of the human genome. Genetic screening, Kopenhagen.Google Scholar
  8. Decruyenaere, M., Evers-Kiebooms, G. Denayer, L. & Van den Berghe, H. (1991), ‘Cystic fibrosis: community knowledge and attitudes towards carrier screening and prenatal diagnosis’, Clinical genetics, Vol. 41 pp. 189–196.CrossRefGoogle Scholar
  9. Decruyenare, M, Evers-Kiebooms, G., Welkenhuysen, M. Bande-Knops J. et al. (1995), ‘Adolescents’ opinions about genetic risk information, prenatal diagnosis, and pregnancy termination’, Journal of medical genetics, Vol. 32, pp. 799–804.Google Scholar
  10. Dierickx, K. (1997a), ‘Ethische reflecties omtrent het tijdstip voor een screening op gendragerschap. Het voorbeeld van mucoviscidose’ [Ethical reflections on the time of screening for gene carriership. The example of cystic fibrosis], Tijdschrift voor geneeskunde [Journal for medicine], Vol. 53, pp. 1493–1500.Google Scholar
  11. Dierickx, K. (1997b), ‘Preventie en predictieve genetische gezondheidszorg’ [Prevention and predictive healthcare], in XXX, Preventie en gezondheidspromotie [Prevention and health promotion], Kluwer, Diegem, pp. 64–73.Google Scholar
  12. Haan, E.A. (1993), ‘Screening for carriers of genetic disease: points to consider’, The medical journal of Australia, Vol. 158, pp. 419–421.PubMedGoogle Scholar
  13. Nuffield Council on Bioethics (1993), Genetic screening. Ethical issues, London.Google Scholar
  14. Nys, H. (1995), La medecine et le droit [Medicine and Law], Kluwer, Diegem.Google Scholar
  15. Te Meerman, G.J. & Dankert-Roelse, J.E. (1991), ‘Pros and cons of neonatal screening for cystic fibrosis’, L.-C. Tsui (ed.), The identification of the CF gene, New York, pp. 83–95.Google Scholar
  16. (1994), ‘Norwegian Law on assisted reproduction and genetics’, Bulletin of medical ethics, Vol. 99, pp. 8–11.Google Scholar
  17. Watson, E.K., Williamson, R. & Chappie, J. (1991), ‘Attitudes to carrier screening for cystic fibrosis: a survey of health care professionals, relatives of sufferers and other members of the public’, British journal of general practice, Vol. 41, pp. 237–240.PubMedGoogle Scholar
  18. Welkenhuysen, M., Evers-Kiebooms, G., Decruyenaere, M., Van den Berghe, H., et al. (1996a), ‘Adolescents’ attitudes towards carrier testing for cystic fibrosis and its relative stability over time’, European Journal of human genetics, Vol. 4, pp. 52–62.PubMedGoogle Scholar
  19. Welkenhuysen, M., Decruyenaere, M., Evers-Kiebooms, G., Van den Berghe, H. (1996b), Jongeren en erfelijkheid. Hun beeldvormingover erfelijkeziekten, erfelijke risico’s engenetische tests [Adolescents and genetics. Their image about genetic diseases, genetic riks and genetic tests], Garant, Leuven/Apeldoorn.Google Scholar
  20. Welkenhuysen, M., Evers-Kiebooms, G., Decruyenaere, M. & Van den Berghe, H. (1996c), ‘Unrealistic optimism and genetic risk’, Psychology and health, Vol. 11, pp. 479–492.Google Scholar
  21. Wertz, D.C. & Fletcher, J.C. (1989), ‘An international survey of attitudes of medical geneticists toward mass screening and access to results’, Public Health Review, Vol. 104, pp. 35–44.Google Scholar
  22. Williamson, R., Allison, M.E.D., Bentley; T.J. et al. (1989), ‘Community attitudes to cystic fibrosis carrier testing in England: a pilot study’, Prenatal diagnostics, Vol. 9, pp. 727–734.CrossRefGoogle Scholar
  23. Zeesman, S., Clow, C, Cartier, L. & Scriver, C. (1984), ‘A private view of heterozygosity: eight-year-follow-up on carriers of Tay-Sachs gene detected by high school screening in Montreal’, American journal of medical ` genetics, Vol. 18, pp. 769–778.PubMedCrossRefGoogle Scholar

Copyright information

© Kluwer Academic/Plenum Publishers 1999

Authors and Affiliations

  • Kris Dierickx
    • 1
  1. 1.Centre for Biomedical Ethics and LawK.U. LeuvenBelgium

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