Communication of results and disclosure of incidental findings in longitudinal paediatric research

Abstract

As there is no consensus within European Birth cohorts how to deal with results and incidental findings, we propose a general policy.

Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform

“…18 Further, the emergence of paediatric longitudinal biobank studies further complicates the WGS issues surrounding the return of results as asymptomatic children may be enrolled at birth. 19 APPROACHES FROM ADULT TESTING As WGS enters both paediatric research and even clinical practice for children with rare disorders, some lessons can also be drawn from the use of WGS in research involving adults. A number of approaches have sought to limit the amount of unsolicited information revealed.…”

Towards a European consensus for reporting incidental findings during clinical NGS testing

“…Controversy still remains as to the exact meaning of the term 'incidental finding'. 19 Nonetheless, there is a general plea from patient groups and clinicians that consistent terminology must be used.…”

Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases

“…21 Ultimately, a balance is needed between a parent's desire to receive IF and the child's best interests. 22 Respondents did not support the counterargument that the return of research-related IF poses a threat to the child's 'right' to an open future. [23][24][25][26] As such, parental opinions presented in our study neither echo the recommendations of the RMGA Statement of Principles on the Return of Research Results and Incidental Findings, 27 nor the recent P 3 G international statement, 2 which prioritise the child's best interests and limit testing and disclosure to early-onset and actionable conditions.…”