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Table 3 Voting results on amendments to 4 position statements after Round 2

From: A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada

#

Amended statement

Accept (n = 12)

Reject (n = 12)

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

9 (75%)

3 (25%)

10

Anonymized pediatric data should be made available via publicly accessible databases

6 (50%)

6 (50%)

11

Identifiable pediatric genomic and associated data should be coded and made available through a controlled or registered access process

6 (50%)

6 (50%)

12

Providing children and their families the opportunity to share their genomic and associated data is an obligation of researchers

5 (42%)

7 (58%)

13

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

8 (67%)

4 (33%)

  1. Amendments are indicated in italics