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Protocol - Understanding Health Implications of Genomics

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Description

The KnowGene Scale is a 16-item scale administered to patients after genetic testing and/or genetic counseling to measure their understanding of the health implications of genetic testing results. Includes health implications to oneself as well as relatives. This measure covers penetrance, actionability, limitations of current technology, and monogenic inheritance patterns.

Specific Instructions

The KnowGene Scale is specific to monogenic or familial cancer.  

Protocol

1. Knowing about inherited risk (passed down within a family) can affect choices about cancer treatments (for example, medications or surgery).

[ ] Agree

[ ] Disagree

[ ] Don’t know

2. People with an inherited risk for cancer (and their at-risk relatives) are more likely to develop more than one type of cancer.

[ ] Agree

[ ] Disagree

[ ] Don’t know

3. A person with inherited risk for cancer will definitely get cancer one day.

[ ] Agree

[ ] Disagree

[ ] Don’t know

4. The lifetime chance of getting cancer depends on which altered cancer gene is inherited.

[ ] Agree

[ ] Disagree

[ ] Don’t know

5. People with an inherited risk for cancer may get cancer at a younger age than people with average risk.

[ ] Agree

[ ] Disagree

[ ] Don’t know

6. In the future, more information could become available that could alter the meaning of genetic test results.

[ ] Agree

[ ] Disagree

[ ] Don’t know

7. Female-specific cancer risk, such as ovarian cancer, can generally be passed on from either the father or mother.

[ ] Agree

[ ] Disagree

[ ] Don’t know

8. The blood relatives (for example, sister, father, or child) of a person with a mutation in a cancer risk gene might share the same gene mutation.

[ ] Agree

[ ] Disagree

[ ] Don’t know

9. A person with an inherited risk for cancer may have distant relatives (for example, cousins) who also have increased cancer risk.

[ ] Agree

[ ] Disagree

[ ] Don’t know

10. All children of a person with inherited cancer risk will also have inherited cancer risk.

[ ] Agree

[ ] Disagree

[ ] Don’t know

11. In most cases, the sisters and brothers of a person with inherited risk have a 50-50 (50%) chance of having inherited risk for cancer too.

[ ] Agree

[ ] Disagree

[ ] Don’t know

12. All of the gene mutations that could increase risk for cancer have been discovered.

[ ] Agree

[ ] Disagree

[ ] Don’t know

13. If a person does not have a mutation found on genetic testing (negative result), interpreting results will depend on whether someone in the family has a known gene mutation associated with cancer risk (positive result).

[ ] Agree

[ ] Disagree

[ ] Don’t know

14. Some gene mutations mean a larger increase in the risk for cancer while others mean a smaller increase in the risk for cancer.

[ ] Agree

[ ] Disagree

[ ] Don’t know

15. A Variant of Uncertain Significance (VUS) will not likely influence recommendations for screening or prevention.

[ ] Agree

[ ] Disagree

[ ] Don’t know

16. Multi-gene panel testing could find a mutation in a gene that is not clearly associated with the pattern of cancer in the family.

[ ] Agree

[ ] Disagree

[ ] Don’t know

Items 1, 2, 4, 5, 6, 7, 8, 9, 11, 13, 14,15, and 16, the correct answer is Agree.

Reprinted from Patient Education and Counseling, Volume 102, Underhill-Blazey, M., Stopfer, J., Chittenden, A., Nayak, M.M., Lansang, K., Lederman, R., Garber, J., & Gundersen, D.A., Development and testing of the KnowGENE scale to assess general cancer genetic knowledge related to multigene panel testing, pages 1558-1564, Copyright 2019, with permission from Elsevier.

Protocol Name from Source

KnowGene

Availability

Limited Availability

Personnel and Training Required

None

Equipment Needs

None

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 questionnaire

Life Stage

Adult

Participants

Patient after receipt of genetic results

Selection Rationale

The scale has been validated, has adequate psychometric properties, and is low burden for patients. The scale deeply assesses the understanding of health implications as a result of return of genetic results—specifically, monogenic familial cancer testing. It is most appropriate for assessing individuals who are about to or who have just undergone clinical monogenic testing.

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Genomic Medicine Implementation KnowGene Scale Assessment Scale 7409077 CDE Browser
Derived Variables

None

Process and Review

Not applicable

Source

Underhill-Blazey, M., Stopfer, J., Chittenden, A., Nayak, M. M., Lansang, K., Lederman, R., Garber, J., Gundersen, D. A. (2019). Development and testing of the KnowGene scale to assess general cancer genetic knowledge related to multigene panel testing. Patient Education and Counseling, 102, 1558–1564.

Copyright 2019, Elsevier. Posted with permission from Elsevier.

General References

Hooker, G. W., Clemens, K. R., Quilin, J., Vogel Postula, K. J., Nagy, R., & Buchanan, A. H. (2017). Cancer Genetic Counseling and Testing in an Era of Rapid Change. Journal of Genetic Counseling, 26(6), 1244–1253.

De Geus, E., Eijzenga, W., Menko, F. H., Sijomn, T. H., dr Haes, H. C., Aalfs, C. M., & Smets, E. M. (2016). Design and feasibility of an intervention to support cancer genetic counselees in informing their at-risk relatives. Journal of Genetic Counseling, 25(6), 1179–1187.

Protocol ID

311601

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Genomic Medicine Implementation
Measure Name

Understanding Health Implications of Genomics

Release Date

September 10, 2020

Definition

An assessment of a patient’s understanding of the personal and familial health implications of genetic testing results.

Purpose

An instrument that may be used to measure a patient’s knowledge of hereditary genetics and health after genetic testing and/or genetic counseling. Patient knowledge improves decision-making around actionable genetic results, improves the uptake of necessary medical interventions, and helps the patient communicate with other family members about their potential health risks.

Keywords

Genetic counseling, genetic testing, genomic testing, genetic screening, health implications, familial cancer, cancer genetics, gene panel testing