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The goal of this application is to gain a deeper understanding of decision-making for genetic testing and identify effective choice-architecture-based strategies to improve decisions in genetic testing. The investigators hypothesize that choice architecture (i.e. framing) affects decision-making for hypothetical genetic testing scenarios.
After providing opt-in electronic consent, eligible consented participants will be randomized to one of two hypothetical genetic testing scenarios (rare, life-altering genetic condition or common, life-threatening genetic condition). The genetic testing scenarios include brief detailed information about genetic testing (i.e. how results may influence treatment decisions) as well as information about standard approaches to treatment. Subjects will be randomized to receive a framing conditions (e.g. choice, opt-in, opt-out, enhanced choice). Participants will select a preferred testing option to the hypothetical scenario and will complete several validated instruments.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| rare genetic disease | Other | Hypothetical scenario 1: rare, life-altering genetic condition (congenital hypogonadotropic hypogonadism) |
|
| common genetic disease | Other | Hypothetical scenario 2: common, life-threatening genetic condition (hereditary breast and ovarian cancer) |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| choice decision frame | Behavioral | active choice for genetic testing |
|
| Measure | Description | Time Frame |
|---|---|---|
| Genetic testing decision | Opting "yes" for genetic testing or "no" refusing genetic testing | after reading the scenario and viewing frame (approximately 10 minutes) |
| Satisfaction with Decision Scale (SWD) | SWD is a validated 6-item instrument, items are scored on a 1-5 scale with higher scores indicating greater satisfaction with the decision taken | study completion (approximately 30 minutes) |
| Decisional Regret Scale (DRS) | DRS is a validated 5-item instrument, items are scored on a 1-5 scale with higher scores indicating more regret with the decision taken | study completion (approximately 30 minutes) |
| Measure | Description | Time Frame |
|---|---|---|
| Newest Vital Sign (NVS) | NVS is a validated 6-item instrument, questions are based on reading and interpreting a food label, higher scores (more correct answers) indicate greater levels of literacy and numeracy abilities | study completion (approximately 30 minutes) |
| Experience with genetic disease |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Andrew A Dwyer, PhD | Boston College | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Boston College | Chestnut Hill | Massachusetts | 02476 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 34202935 | Result | Dwyer AA, Shen H, Zeng Z, Gregas M, Zhao M. Framing Effects on Decision-Making for Diagnostic Genetic Testing: Results from a Randomized Trial. Genes (Basel). 2021 Jun 20;12(6):941. doi: 10.3390/genes12060941. |
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Randomization to 1 of 6 decision frames for two disease testing scenarios (arms)
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participants are blinded to arm and decision frame
| opt-in decision frame | Behavioral | "gain" frame for genetic testing |
|
| opt-out decision frame | Behavioral | "loss" frame for genetic testing |
|
| enhanced choice (context) decision frame | Behavioral | consequences of genetic testing |
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| enhanced choice (norms) decision frame | Behavioral | social norms for genetic testing |
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| enhanced choice (affect) decision frame | Behavioral | commitments for genetic testing |
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Single "yes"/"no" question to determine a personal or family experience the genetic condition being presented in the scenario (arm) |
| Baseline (study onset) |