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Adolescent Carrier Testing in Practice: The Impact of Legal Rulings and Problems with “Gillick Competence”

Journal of Genetic Counseling volume 17, pages 509–521 (2008)Cite this article

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An Erratum to this article was published on 27 September 2008

An Erratum to this article was published on 27 September 2008

An Erratum to this article was published on 27 September 2008

Abstract

Testing for carrier status for various genetic conditions often takes place during adolescence or young adulthood. This paper aims to add to the discussion of when is the best time to test through an examination of how the law on medical treatment of children appears to be used in practice and how a careful examination of legal rulings might shed light upon best practice in this area. Our focus is on the Gillick ruling (Gillick v West Norfolk and Wisbech Area Health Authority 1986), which dealt with consent and confidentiality with respect to the provision of contraceptive advice to under 16-year-olds, but which has become a general benchmark for consent to medical treatment within UK law. In addition, we draw upon data from a qualitative research study which indicates potential problems with certain practices in respect of the influence of the Gillick ruling on carrier testing procedures. We present evidence that in at least some instances, adolescents have reduced capacity to grasp fully the implications of carrier test results. In the light of our findings we make recommendations for practice concerning the testing of children and young persons.

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Acknowledgements

This work arises from a research project, “The Transgenerational Communication of Genetic Information”, funded by the Wellcome Trust’s program in Biomedical Ethics and undertaken as part of the programme of work of the ESRC Centre for the Economic and Social Aspects of Genomics (CESAGen). The grant applicants were Angus Clarke, Paul Atkinson, and Peter Collins. We are grateful to the participants who agreed to be interviewed and to Alan Eldridge of the Arthur Bloom Haemophilia Centre, University Hospital of Wales, Cardiff, who provided significant assistance in identifying families for recruitment to this project. We also gratefully thank Rebecca Dimond for her assistance with interviews, with data analysis, and for her comments on her earlier draft of this paper. Brigid Dimond also assisted us by providing commentary on recent developments in UK law, for which we are most thankful. We also wish to thank the two anonymous reviewers for their comments and Paul Atkinson, ESRC Centre for the Economic and Social Aspects of Genomics, School of Social Sciences, Cardiff University, for his comments and insights following review.

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Authors and Affiliations

  1. Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Badenoch Building, Old Road Campus, Headington, Oxford, OX3 7LF, UK

    Paula Boddington

  2. Chordata Research, Mark, Somerset, England, UK

    Maggie Gregory

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  1. Paula Boddington
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  2. Maggie Gregory
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Correspondence to Paula Boddington.

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An erratum to this article can be found at http://dx.doi.org/10.1007/s10897-008-9192-x

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Boddington, P., Gregory, M. Adolescent Carrier Testing in Practice: The Impact of Legal Rulings and Problems with “Gillick Competence”. J Genet Counsel 17, 509–521 (2008). https://doi.org/10.1007/s10897-008-9168-x

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  • DOI: https://doi.org/10.1007/s10897-008-9168-x

Keywords

  • Adolescence
  • Carrier testing
  • Consent
  • Gillick
  • Law
  • Policy
  • Understanding