» Articles » PMID: 30894702

Rethinking the "open Future" Argument Against Predictive Genetic Testing of Children

Overview
Journal Genet Med
Publisher Elsevier
Specialty Genetics
Date 2019 Mar 22
PMID 30894702
Citations 30
Authors
Affiliations
Soon will be listed here.
Abstract

Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.

Citing Articles

Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents.

Kilbride M, Peshkin B, Hamilton J, Brower J, Ovadia H, Friedman Ross L Public Health Genomics. 2025; 28(1):102-112.

PMID: 39908008 PMC: 11867838. DOI: 10.1159/000543913.


Engaging adolescents and young adults in decisions about return of genomic research results: study protocol for a mixed-methods longitudinal clinical trial protocol.

Blumling A, McGowan M, Prows C, Childers-Buschle K, Martin L, Lynch J BMC Med Inform Decis Mak. 2024; 24(1):391.

PMID: 39696322 PMC: 11657641. DOI: 10.1186/s12911-024-02784-w.


Factors affecting couples' decision making about expanded prenatal cell-free DNA screening.

Mumford K, Hendriks S, Miner S, Huelsnitz C, Wakim P, Berkman B Genet Med Open. 2024; 2.

PMID: 39634380 PMC: 11613822. DOI: 10.1016/j.gimo.2024.101890.


Pediatric nephrologists' perspectives and clinical practices related to genetic testing and education.

Fernandez H, Lipton M, Balderes O, Lin F, Marasa M, Rasouly H Pediatr Nephrol. 2024; 40(3):755-763.

PMID: 39382664 PMC: 11745921. DOI: 10.1007/s00467-024-06539-7.


Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.

Rensink M, Bolt I, Schermer M Eur J Hum Genet. 2024; 32(11):1361-1370.

PMID: 39317749 PMC: 11576964. DOI: 10.1038/s41431-024-01688-7.


References
1.
Mintz R, Loike J, Fischbach R . Will CRISPR Germline Engineering Close the Door to an Open Future?. Sci Eng Ethics. 2018; 25(5):1409-1423. DOI: 10.1007/s11948-018-0069-6. View

2.
Hercher L, Uhlmann W, Hoffman E, Gustafson S, Chen K . Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors. J Genet Couns. 2016; 25(6):1139-1145. DOI: 10.1007/s10897-016-9992-3. View

3.
Fenwick A . Are guidelines for genetic testing of children necessary?. Fam Cancer. 2009; 9(1):23-5. DOI: 10.1007/s10689-009-9278-0. View

4.
De Souza M . Regulating preimplantation genetic diagnosis in Australia: Disability and parental choice. J Law Med. 2015; 22(4):915-33. View

5.
. Ethical issues with genetic testing in pediatrics. Pediatrics. 2001; 107(6):1451-5. DOI: 10.1542/peds.107.6.1451. View