TY - JOUR
T1 - Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations
AU - Borry, Pascal
AU - Evers-Kiebooms, Gerry
AU - Cornel, Martina C
AU - Clarke, Angus
AU - Dierickx, Kris
AU - Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG)
AU - Tranebjærg, Lisbeth
N1 - Keywords: Adolescent; Adult; Child; Ethics, Medical; Genetic Counseling; Genetic Testing; Genetics, Medical; Great Britain; Health Planning Guidelines; Health Policy; Humans; Minors; Societies, Medical
PY - 2009
Y1 - 2009
N2 - 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.
AB - 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.
U2 - 10.1038/ejhg.2009.25
DO - 10.1038/ejhg.2009.25
M3 - Journal article
C2 - 19277061
SN - 1018-4813
VL - 17
SP - 711
EP - 719
JO - European Journal of Human Genetics
JF - European Journal of Human Genetics
IS - 6
ER -
