domingo, 6 de octubre de 2019

Discouraging Elective Genetic Testing of Minors: A Norm under Siege in a New Era of Genomic Medicine. - PubMed - NCBI

2019 Sep 23. pii: a036657. doi: 10.1101/cshperspect.a036657. [Epub ahead of print]

Discouraging Elective Genetic Testing of Minors: A Norm under Siege in a New Era of Genomic Medicine.

Author information

1: Sarah Lawrence College, Joan H. Marks Graduate Program in Human Genetics, Bronxville, New York 10708, USA.

Abstract

Consistently, the field of genetic counseling has advocated that parents be advised to defer elective genetic testing of minors until adulthood to prevent a range of potential harms, including stigma, discrimination, and the loss of the child's ability to decide for him- or herself as an adult. However, consensus around the policy of "defer-when-possible" obscures the extent to which this norm is currently under siege. Increasingly, routine use of full or partial genome sequencing challenges our ability to control what is discovered in childhood or, when applied in a prenatal context, even before birth. The expansion of consumer-initiated genetic testing services challenges our ability to restrict what is available to minors. As the barriers to access crumble, medical professionals should proceed with caution, bearing in mind potential risks and continuing to assess the impact of genetic testing on this vulnerable population.