Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations

Pascal Borry; Gerry Evers-Kiebooms; Martina C Cornel; Angus Clarke; Kris Dierickx; Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG); Lisbeth Tranebjærg

doi:10.1038/ejhg.2009.25

Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations

Pascal Borry, Gerry Evers-Kiebooms, Martina C Cornel, Angus Clarke, Kris Dierickx, Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG), Lisbeth Tranebjærg

Medical Genetics Program

123 Citations (Scopus)

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.

Original language	English
Journal	European Journal of Human Genetics
Volume	17
Issue number	6
Pages (from-to)	711-9
Number of pages	8
ISSN	1018-4813
DOIs	https://doi.org/10.1038/ejhg.2009.25
Publication status	Published - 2009

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Borry, P., Evers-Kiebooms, G., Cornel, M. C., Clarke, A., Dierickx, K., Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG), & Tranebjærg, L. (2009). Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations. European Journal of Human Genetics, 17(6), 711-9. https://doi.org/10.1038/ejhg.2009.25

Borry, P, Evers-Kiebooms, G, Cornel, MC, Clarke, A, Dierickx, K, Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG) & Tranebjærg, L 2009, 'Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations', European Journal of Human Genetics, vol. 17, no. 6, pp. 711-9. https://doi.org/10.1038/ejhg.2009.25

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AU - Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG)

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Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations

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