Table 4 Rankings for position statements based on combined average ratings after Rounds 1 and Round 2

5

Parental authorization for ongoing, or future unspecified research should include the provision of information related to existing data governance (RI + D)

1

8

The decision to share pediatric genomic and associated clinical data should be supported by an evaluation of realistic risks and benefits (F + C)

2

3

Parents should be informed in a transparent manner how their child’s genomic and associated clinical data will be securely managed and used (RI + C)

3

1

The best interests of children are primary (RI + F)

4

7

Professionals involved in consent processes related to data sharing and data-intensive research have the responsibility to balance potential benefits and risks. A trained designate should be available to discuss these with parents at the time of consent (D + F)

5

9

Duplicative collection of genomic research data involving pediatric patients should be avoided (D + F)

6

13

Incidental (secondary) findings of clinically actionable, validated genomic results should be made available

6

6

Values conveyed by family, legal guardians or primary care givers should be respected when possible (RI + F)

7

2

Children should be listened to, and involved in decision-making processes related to genomic and associated clinical data sharing in developmentally appropriate ways (D + F)

8

4

In a research context, data sharing infrastructures should enable children to withdraw consent to continued sharing of their genomic and associated clinical data when possible upon reaching the age of majority (D + F)

8