‘We Should View Him as an Individual’: The Role of the Child’s Future Autonomy in Shared Decision-Making About Unsolicited Findings in Pediatric Exome Sequencing

@article{Dondorp2021WeSV,
  title={‘We Should View Him as an Individual’: The Role of the Child’s Future Autonomy in Shared Decision-Making About Unsolicited Findings in Pediatric Exome Sequencing},
  author={Wybo J. Dondorp and Ineke Lle Bolt and Aad Tibben and Guido de Wert and Marieke J H van Summeren},
  journal={Health Care Analysis},
  year={2021},
  volume={29},
  pages={249 - 261}
}
In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined… 

References

SHOWING 1-10 OF 51 REFERENCES
Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child's future autonomy.
In a previous study we found that parents of children with developmental delay (DD) favoured acceptance of unsolicited findings (UFs) for medically actionable conditions in childhood, but that
Rethinking the “Open Future” Argument against Predictive Genetic Testing of Children
TLDR
An expanded model of children’s interests that might be considered in such circumstances is offered, and two case analyses are presented to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.
Is There a Case in Favour of Predictive Genetic Testing in Young Children?
TLDR
It is argued that parents are generally best placed to judge what is in their own child's overall interests, and that parental request for testing after appropriate genetic counselling should be respected unless there is clear evidence that the child will be harmed in an overall sense as a result of testing.
Whole-exome sequencing in pediatrics: parents’ considerations toward return of unsolicited findings for their child
TLDR
Key findings from this study were that all parents favored acceptance of UFs for medically actionable conditions in childhood, but that preferences and considerations diverged for UFs with no medical actionability, or only in adulthood, and regarding carrier-status.
The genetic testing of children. Working Party of the Clinical Genetics Society (UK)
  • A. Clarke
  • Medicine, Psychology
    Journal of medical genetics
  • 1994
(2) In contrast, the working party believes that predictive testing for an adult onset disorder should generally not be undertaken if the child is healthy and there are no medical interventions
From genetics to genomics: ethics, policy, and parental decision-making.
TLDR
It is argued that respect for parental decision-making should play a larger role in shaping pediatric genetic testing practices, and play a similar role regarding decisions to use emerging genomic technologies.
Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children's Futures
What limits the genetic choices parents make for their children? Is it okay to select the sex of our children, or for deaf parents to select deaf children? In this second edition of Genetic Dilemmas,
Re-examining the Ethics of Genetic Counselling in the Genomic Era
TLDR
It is argued that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain or use genetic information.
Ethical Issues in Newborn Sequencing Research: The Case Study of BabySeq
TLDR
It is argued that researchers should design their pediatric studies to avoid, when possible, identifying adult-onset-only genetic variants and that parents should not be offered the return of this information if discovered unless relevant for the child’s current or imminent health.
Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board
TLDR
The Informed Cohort Oversight Board developed guidelines for the return of results that respect the preferences of parents, children, and adult participants while seeking to protect against harm.
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