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Protocol - Sharing Genomic Information with Relatives

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Description

This series of questions can be used to determine who the individual shared his or her genetic tests results with, if anyone, and why it was important to share the results.

Specific Instructions

A preliminary question regarding whether or not the respondent has had genetic testing is necessary before this follow-up question. 

Protocol

Notes: Family Communication is to be administered for both positive and negative results. We feel that participants will still find it important to communicate to other family members that their genetic work-up was negative.

Did you receive a genetic test result for yourself or your child?

[ ] Yes

[ ] No

If so, did the result provide a genetic diagnosis (was there a positive genetic test result)?

[ ] Yes

[ ] No

CSER

1. Since receiving your/your child’s study results, have you shared the information with any biological family members (blood relatives)?

[ ] Yes

[ ] I didn’t share this information with anyone

[ ] I haven’t shared this information yet, but plan to in the future

[ ] I don’t have blood relatives to share this information with

2. Since receiving your/your child’s study results, have you shared the information with any of the following blood relatives?

a. My child’s other biological parent

[ ] Yes

[ ] No

[ ] N/A

b. My child(ren)

[ ] Yes

[ ] No

[ ] N/A

c. My siblings

[ ] Yes

[ ] No

[ ] N/A

d. My parents

[ ] Yes

[ ] No

[ ] N/A

e. My other biological family members

[ ] Yes

[ ] No

[ ] N/A

If Yes, specify who: _______________________________

eMERGE

3. Thinking about the family members you DID share your genetic test result with, which of the following were important to your decision to share? Check all that apply.

[ ] a. I felt obligated to share my genetic test result

[ ] b. I was encouraged by my health care provider

[ ] c. I made an agreement to tell them before receiving my genetic test result

[ ] d. I was encouraged by other family members to share the information

[ ] e. I felt the information could help my family members in making medical decisions

[ ] f. I was asked about my genetic test result by a family member

[ ] g. I wanted to know if a family member had symptoms related to my genetic test result

[ ] h. I needed emotional support from my family member

[ ] i. I needed advice from my family member in making medical decisions

[ ] j. I wanted to provide my family member information about their risk

[ ] k. I wanted to encourage them to get tested

[ ] l. Other

Please specify: ___________________________________

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

Availability

Available

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 CategoryRequired
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

Life Stage

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
StandardNameIDSource
Common Data Elements (CDE) Genomic Medicine Implementation Genetic Testing Result Family Communication Assessment Text 7408777 CDE Browser
Derived Variables

None

Process and Review

Not applicable

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 IDVariable DescriptiondbGaP Mapping
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