Appendix Table II.

Core Elements for Data Sharing

Core Elements	Score	Explanation of Score
Deposition into public databases	0	No data deposition policy
	1	Policy is to not deposit data into databases
	2	Policy is to deposit data into databases, and no other details provided
	3	Policy specifies any 1 of the following: [type of data*, volume of data*, with or without phenotypic information, which databases*], opt-in/out option for patients	*Type of data= sequence vs. variant level *Volume of data= entire vs. partial sequence; all vs. some variants *Databases= by name or category (e.g. restricted vs. private)
	4	Policy specifies any 2 of the following: [type of data*, volume of data*, with or without phenotypic information, which databases*], opt-in/out option for patients
	5	Policy specifies any 3 of the following: [type of data*, volume of data*, with or without phenotypic information, which databases*], opt-in/out option for patients
	6	Policy specifies all 4 of the following: [type of data*, volume of data*, with or without phenotypic information, which databases*], opt-in/out option for patients
Education and research purposes	0	No policy regarding data use for educational/research purposes
	1	Data used for educational/research purposes, and no opt out option
	2	Data used for educational/research purposes, and opt- out option
Data sharing options for ordering provider/ institution	0	No sharing with provider/institution at all
	1	Sharing of primary result only
	2	Sharing of all primary and secondary results as determined by service lab
	3	Sharing fully annotated variant list
	4	Sharing .vcf files
	5	Sharing .vcf and BAM files

vcf: variant call format; BAM: compressed binary version of a Sequence Alignment/Map format

Source:

Ambry Exome Patient Consent Form (F0912-02-011p-PTM-06), correspondence with lab representative

ARUP Informed Consent for Exome Sequencing with Symptom-Guided Analysis (ARUP Rev.1 5/12), correspondence with lab representative

Baylor Whole Exome Sequencing Requisition - Information and Consent for Testing (Last Updated: 9/24/2012), correspondence with lab representative

Emory EmExome Informed Consent Document (Rev. 6/2012), correspondence with lab representative

GeneDxXomeDx Informed Consent Document (GeneDx 07/12), correspondence with lab representative

UCLA Informed Consent for Postnatal Clinical Exome Sequencing, correspondence with lab representative