‘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

Abstract

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SDHA secondary findings in germline testing: counseling and surveillance considerations

“…In contrast to high penetrance genes, no clear data exist to demonstrate the benefit of screening during childhood for SDHA PV carriers. Providers and families must balance the possible benefits of surveillance with the ethical tenant of autonomy, or whether the future adult should be allowed to make their own decisions about knowing their genetic status ( Dondorp et al 2021 ). Shared decision-making between providers and patients considering predictive testing for themselves or their children should include a discussion regarding the evolving SDHA penetrance data as well as the impact of rigorous surveillance on children and families.…”

Respect voor (toekomstige) personen

“…Vanuit humanistisch perspectief valt denk ik te verdedigen dat het respecteren van de informationele privacy van de toekomstige volwassene toch in ieder geval altijd een prima facie overweging zou moeten zijn bij besluitvorming over dit soort testen en het terugkoppelen van informatie. [37] Prima facie wil zeggen dat het gaat om een argument dat het soms inderdaad zal moeten afleggen tegen andere overwegingen, maar dat dan altijd wel moet worden aangetoond, of ten minste aannemelijk gemaakt, dat die inderdaad een groter gewicht hebben. Bij nevenbevindingen kan het gaan om het belang van bloedverwanten, maar natuurlijk ook om een belang van het kind zelf bij het niet verloren gaan van voor toekomstige keuzes relevante informatie over zichzelf.…”

Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child’s future autonomy

“…However, in the era of patient-centred medicine, an ideal of shared decision-making has emerged that advocates that healthcare professionals and patients (or their representatives) exchange information and views, and jointly reach a decision [39,40]. We consider the implications of this ideal in the context of decision-making about WES-findings in a separate paper [41].…”