Protocol - Sharing Genomic Information with Relatives

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a “don’t know” response is provided.

Note: Also administered as an online questionnaire.

Equipment Needs

The PhenX Working Group acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer or handheld computer to administer a computer-assisted questionnaire.

Requirements

Requirement Category	Required
Major equipment	No
Specialized training	No
Specialized requirements for biospecimen collection	No
Average time of greater than 15 minutes in an unaffected individual	No

Mode of Administration

Self-administered or interviewer-administered questionnaire

Lifestage

Adult

Participants

Adult patients after genetic testing

Selection Rationale

For purposes of collecting information about which family members the individual shared genetic results with and why, the three items from the Clinical Sequencing Evidence-Generating Research (CSER) and Electronic Medical Records and Genomics (eMERGE) consortiums are low burden and complement one another.

Language

English

Standards

Standard	Name	ID	Source

Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Family Communication from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results) & Electronic Medical Records and Genomics (eMERGE) Family Communication of Genetic Results

Source

National Human Genome Research Institute (NHGRI), National Cancer Institute (NCI), and National Institute on Minority Health and Health Disparities (NIMHD). Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post–Return of Results Follow-up #2 (5–7 months post–Return of Results). Available at https://cser-consortium.org/resources

Electronic Medical Records and Genomics (eMERGE) Family Communication of Genetic Results Questionnaire

General References

Manuscripts are in progress.

Protocol ID

311501

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX311501_Genetic_Test_Result
	PX311501010000	Did you receive a genetic test result for more yourself or your child? show less	N/A
PX311501_Genetic_Test_Result_Diagnosis
	PX311501020000	If so, did the result provide a genetic more diagnosis (was there a positive genetic test result)? show less	N/A
PX311501_Genetic_Test_Result_Shared_Biological_Family
	PX311501030000	Since receiving your/your child's study more results, have you shared the information with any biological family members (blood relatives)? show less	N/A
PX311501_Genetic_Test_Result_Shared_Children
	PX311501040200	Since receiving your/your child's study more results, have you shared the information with any of the following blood relatives? My child(ren) show less	N/A
PX311501_Genetic_Test_Result_Shared_Other_Biological_Family
	PX311501040501	Since receiving your/your child's study more results, have you shared the information with any of the following blood relatives? My other biological family members show less	N/A
PX311501_Genetic_Test_Result_Shared_Other_Biological_Family_Detail
	PX311501040502	Since receiving your/your child's study more results, have you shared the information with any of the following blood relatives? My other biological family members. Specify: show less	N/A
PX311501_Genetic_Test_Result_Shared_Other_Biological_Parent
	PX311501040100	Since receiving your/your child's study more results, have you shared the information with any of the following blood relatives? My child's other biological parent show less	N/A
PX311501_Genetic_Test_Result_Shared_Parent
	PX311501040400	Since receiving your/your child's study more results, have you shared the information with any of the following blood relatives? My parents show less	N/A
PX311501_Genetic_Test_Result_Shared_Sibling
	PX311501040300	Since receiving your/your child's study more results, have you shared the information with any of the following blood relatives? My siblings show less	N/A
PX311501_Genetic_Test_Result_Share_Decision
	PX311501050100	Thinking about the family members you DID more share your genetic test result with, which of the following were important to your decision to share? Check all that apply. show less	N/A
PX311501_Genetic_Test_Result_Share_Decision_Specify
	PX311501050200	Thinking about the family members you DID more share your genetic test result with, which of the following were important to your decision to share? Other, specify show less	N/A

Genomic Medicine Implementation

Measure Name

Communication with Relatives about Genetic Information

Release Date

September 10, 2020

Definition

Questions to determine if the respondent shared genetic test results with family members, and why it was important to share the results. 

Purpose

This series of questions may be used to determine whether or not the respondent shared genetic results with anyone, the relationship with that person, and why it was important to share the results. Family members may provide emotional support, if needed.

Keywords

Share test results, genetic testing, genomic medicine, Clinical Sequencing Evidence-Generating Research, CSER, Electronic Medical Records and Genomics, eMERGE, return of results, RoR, family, Communication

Measure Protocols

Protocol ID	Protocol Name
311501	Sharing Genomic Information with Relatives

Publications

There are no publications listed for this protocol.