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European Journal of Human Genetics
  • Policy
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Genetic testing in asymptomatic minors

Background considerations towards ESHG Recommendations

European Journal of Human Geneticsvolume 17, pages711–719 (2009)Cite this article

Abstract

Although various guidelines and position papers have discussed, in the past, the ethical aspects of genetic testing in asymptomatic minors, the European Society of Human Genetics had not earlier endorsed any set of guidelines exclusively focused on this issue. This paper has served as a background document in preparation of the development of the policy recommendations of the Public and Professional Committee of the European Society of Human Genetics. This background paper first discusses some general considerations with regard to the provision of genetic tests to minors. It discusses the concept of best interests, participation of minors in health-care decisions, parents’ responsibilities to share genetic information, the role of clinical genetics and the health-care system in communication within the family. Second, it discusses, respectively, the presymptomatic and predictive genetic testing for adult-onset disorders, childhood-onset disorders and carrier testing.

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Acknowledgements

Part of this contribution was supported by the Eurogentest Network of Excellence of the EU, FP6-512148.

Author information

Authors and Affiliations

  1. Research Fund Flanders, Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven, Belgium

    Pascal Borry & Kris Dierickx

  2. Psychosocial Genetics Unit University Hospitals, Center for Human Genetics, Katholieke Universiteit Leuven, Belgium

    Gerry Evers-Kiebooms

  3. Department of Clinical Genetics/EMGO Institute, Community Genetics, VU University Medical Center, Amsterdam, The Netherlands

    Martina C Cornel

  4. Institute of Medical Genetics, School of Medicine, Cardiff University, Heath Park, Cardiff, Wales, CF14 4XN, UK

    Angus Clarke

Authors
  1. Pascal Borry
  2. Gerry Evers-Kiebooms
  3. Martina C Cornel
  4. Angus Clarke
  5. Kris Dierickx

Consortia

on behalf of the Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG)

Corresponding author

Correspondence toPascal Borry.

Additional information

Members of the PPPC in 2007–2008 were:

Martina Cornel, chair, MD, Epidemiologist, Professor of Community Genetics and Public Health Genomics, Department of Clinical Genetics/EMGO Institute, VU University Medical Center, Amsterdam, The Netherlands; Gerry Evers-Kiebooms PhD, Psychologist, Psychosocial Genetics Unit University Hospitals, Katholieke Universiteit Leuven, Belgium; Ségolène Aymé MD, Medical Geneticist and Epidemiologist, Project Leader of ORPHANET, INSERM, Paris, France; Suzanne Braga MD, Medical Geneticist, Psychotherapist, Family therapist and counselor, SGMG/SSGM, Bern, Switzerland; Franca Dagna Bricarelli Professor, Human Genetics Laboratory, Galliera Hospital, Genoa, Italy; Shirley Hodgson Professor of Cancer Genetics, Honorary Consultant in Clinical Genetics, Department of Clinical Genetics, St George's Hospital, University of London, London, UK; Gyorgy Kosztolany Professor, Director of the Department of Medical Genetics, University of Pécs, Hungary; Jan Lubinski, MD, PhD, Professor, Department of Genetics and Pathology, International Hereditary Cancer Center, Pomeranian Medical University, Szczecin, Poland; Meral Özgüc, Professor, Department of Medical Biology, Faculty of Medicine, Hacettepe University Ankara, Turkey; Christine Patch PhD, RN, Consultant Genetic Counsellor and Manager, Guys and St Thomas’ NHS Foundation Trust, London, UK; Jorge Sequeiros MD, Professor in Medical Genetics, Head of the Department of Human Genetics, University of Porto, Porto, Portugal; Lisbeth Tranebjaerg MD, PhD, Professor in Genetic Audiology, Department of Audiology, H:S Bispebjerg Hospital and Wilhelm Johannsen Centre of Functional Genomics, University of Copenhagen, Denmark; Veronica van Heyningen Dphil, FRS, FRSE, FMedSci, Honorary Professor of Edinburgh University, MRC Human Genetics Unit, Western General Hospital, Edinburgh, UK

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