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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.

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

Lifestage

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

None

Process and Review

Not applicable

Protocol Name from Source

KnowGene

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
PX311601_Inherited_Cancer_Increase_Risk_Amount_Depend_Mutation_Type
PX311601140000 Some gene mutations mean a larger increase more
in the risk for cancer while others mean a smaller increase in the risk for cancer. show less
N/A
PX311601_Inherited_Cancer_Risk_Cancer_Younger_Age
PX311601050000 People with an inherited risk for cancer may more
get cancer at a younger age than people with average risk. show less
N/A
PX311601_Inherited_Cancer_Risk_Definitely_Develop_Cancer
PX311601030000 A person with inherited risk for cancer will more
definitely get cancer one day. show less
N/A
PX311601_Lifetime_Inherited_Cancer_Risk_Depends_Altered_Cancer_Gene
PX311601040000 The lifetime chance of getting cancer more
depends on which altered cancer gene is inherited. show less
N/A
PX311601_Understand_Female_Cancer_Risk_Inherit_Mother_Father
PX311601070000 Female-specific cancer risk, such as ovarian more
cancer, can generally be passed on from either the father or mother. show less
N/A
PX311601_Understand_Health_Gene_Mutation_Increase_Cancer_Discovered
PX311601120000 All of the gene mutations that could more
increase risk for cancer have been discovered. show less
N/A
PX311601_Understand_Health_Risk_Future_Information_Could_Change_Meaning_Results
PX311601060000 In the future, more information could become more
available that could alter the meaning of genetic test results. show less
N/A
PX311601_Understand_Inherited_Cancer_Health_Risk_Develop_More_Than_One_Cancer
PX311601020000 People with an inherited risk for cancer more
(and their at-risk relatives) are more likely to develop more than one type of cancer. show less
N/A
PX311601_Understand_Inherited_Cancer_Risk_Blood_Relatives_Share
PX311601080000 The blood relatives (for example, sister, more
father, or child) of a person with a mutation in a cancer risk gene might share the same gene mutation. show less
N/A
PX311601_Understand_Inherited_Cancer_Risk_Children_Share
PX311601100000 All children of a person with inherited more
cancer risk will also have inherited cancer risk. show less
N/A
PX311601_Understand_Inherited_Cancer_Risk_Distant_Relatives_Share
PX311601090000 A person with an inherited risk for cancer more
may have distant relatives (for example, cousins) who also have increased cancer risk. show less
N/A
PX311601_Understand_Inherited_Cancer_Risk_Sibling_Share
PX311601110000 In most cases, the sisters and brothers of a more
person with inherited risk have a 50-50 (50%) chance of having inherited risk for cancer too. show less
N/A
PX311601_Understand_Inherit_Health_Risk_Affect_Cancer_Treatment_Choice
PX311601010000 Knowing about inherited risk (passed down more
within a family) can affect choices about cancer treatments (for example, medications or surgery). show less
N/A
PX311601_Understand_MultiGene_Test_Mutation_Association_Family_Cancer_Pattern
PX311601160000 Multi-gene panel testing could find a more
mutation in a gene that is not clearly associated with the pattern of cancer in the family. show less
N/A
PX311601_Understand_Negative_Result_Interpretation_Depend_Relative_Has_Positive_Result
PX311601130000 If a person does not have a mutation found more
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). show less
N/A
PX311601_Understand_Variant_Uncertain_Significance_Influence_Health_Test_Recommendation
PX311601150000 A Variant of Uncertain Significance (VUS) more
will not likely influence recommendations for screening or prevention. show less
N/A
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

Measure Protocols
Protocol ID Protocol Name
311601 Understanding Health Implications of Genomics
Publications

There are no publications listed for this protocol.