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Rethinking the "open future" argument against predictive genetic testing of children
Jeremy R Garrett1,2, John D Lantos3,4, Leslie G Biesecker5
1Children's Mercy Bioethics Center, Children's Mercy Kansas City, Kansas City, MO, USA. jgarrett@cmh.edu.
Summary
Predictive genetic testing in children is ethically permissible. An open future is an interest, not a right, and testing decisions should weigh interests against potential harms.
Area of Science:
- Pediatric genetics
- Bioethics
- Genomic medicine
Background:
- Traditional consensus discouraged predictive genetic testing in children without immediate interventions.
- Advances in genomic sequencing and evidence of adequate coping challenge this consensus.
- The "right to an open future" argument remains a key ethical consideration.
Purpose of the Study:
- To evaluate the ethical argument against predictive genetic testing in children based on the "right to an open future."
- To propose a framework for ethically guiding predictive genetic testing decisions in pediatric settings.
Main Methods:
- Ethical analysis of the "right to an open future" argument.
- Development of an expanded model of children's interests.
- Case analyses to illustrate the application of the proposed framework.
Main Results:
- Children's interest in an open future is a significant interest, not an absolute right.
- Predictive genetic testing in children is ethically permissible when benefits outweigh harms.
- The proposed framework offers improved guidance for pediatric genetic testing decisions.
Conclusions:
- Revising the understanding of children's interests is crucial for ethical decision-making in predictive genetic testing.
- Predictive genetic testing can be ethically justified in pediatrics under specific conditions.
- The study provides a practical model for navigating complex ethical considerations in pediatric genomic medicine.
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