Culturally Adapted Genetic Counseling for African American Cancer Survivors
What You Need to Know Before You Apply
What is the purpose of this trial?
The trial aims to create an online educational program to help African American cancer survivors learn about genetic testing for hereditary cancers. The goal is to boost participation in genetic counseling and testing by providing culturally relevant and easy-to-understand information. This program is called Culturally adapted Online Genetic Counseling and Testing Information. Participants will be part of the Detroit Research on Cancer Survivors group and will have been diagnosed with breast, prostate, or colorectal cancer since 2013. Those who have not yet undergone genetic counseling or testing are ideal candidates. The trial seeks to identify barriers and develop a plan to share these findings with the community. As an unphased trial, this study offers participants the chance to contribute to valuable research that can improve access to genetic counseling and testing for their community.
What prior data suggests that this educational genetic counseling intervention is safe?
Research has shown that online genetic counseling, when adapted for different cultures, is generally well-received. Studies have found these services to be reliable and effective, serving people from various backgrounds well.
Online genetic counseling also reaches individuals who might not have access to in-person services. This internet-based approach has proven safe and beneficial, especially for those in remote areas.
In summary, evidence supports that culturally adapted online genetic counseling is safe and useful. No significant reports of negative effects have emerged, making it a safe option for those considering participation in trials involving this type of service.12345Why are researchers excited about this trial?
Researchers are excited about culturally adapted online genetic counseling for African American cancer survivors because it offers a personalized approach that respects cultural backgrounds. Unlike traditional genetic counseling, which may not fully consider cultural nuances, this method tailors information and support to better engage African American communities. By delivering counseling online, it also provides greater accessibility, allowing individuals to receive crucial information conveniently from their homes. This innovative approach aims to increase participation in genetic testing, potentially leading to better-informed health decisions and outcomes for African American cancer survivors.
What evidence suggests that this culturally adapted online genetic counseling program is effective for increasing genetic counseling uptake among African Americans at risk for hereditary cancers?
Research has shown that adapting genetic counseling to fit cultural needs can improve health outcomes for historically marginalized groups. This trial will evaluate the effectiveness of culturally adapted online genetic counseling information. Studies have found that tools like the Genetic Counseling Outcome Scale (GCOS-24) help measure the success of these tailored approaches. Specifically, patients who received culturally adapted genetic counseling felt more empowered and understood their health better. This method aims to increase participation in genetic testing by making the information more relatable and easier to understand. Overall, evidence suggests that customizing genetic counseling to meet cultural needs effectively supports and empowers patients.46789
Who Is on the Research Team?
Felicity WK Harper, Ph.D
Principal Investigator
Barbara Ann Karmanos Cancer Institute
Are You a Good Fit for This Trial?
Inclusion Criteria
Exclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Pre-Intervention
Participants complete questionnaires and assessments prior to the intervention
Intervention
Participants receive the culturally adapted online genetic counseling intervention
Post-Intervention
Participants complete questionnaires immediately after the intervention
Follow-up
Participants are monitored for uptake of genetic counseling and testing, and complete follow-up questionnaires
What Are the Treatments Tested in This Trial?
Interventions
- Culturally adapted Online Genetic Counseling and Testing Information
How Is the Trial Designed?
1
Treatment groups
Experimental Treatment
Culturally developed online Genetic counseling information will be provided. Questionnaires will be administered pre and post genetic counseling intervention as well as 3 months post intervention
Find a Clinic Near You
Who Is Running the Clinical Trial?
Barbara Ann Karmanos Cancer Institute
Lead Sponsor
National Cancer Institute (NCI)
Collaborator
Citations
A preliminary adaptation and validation of the genetic ... - PMC
The Genetic Counseling Outcome Scale (GCOS‐24) is a brief self‐reported questionnaire of 24 questions administered to assess GC interventions and the outcomes ...
Cross‐cultural adaptation of the Genetic Counseling ...
This is the first study to cross-culturally adapt GCOS-24 for use in Canada, providing the first step to a valid, culturally adapted PROM for use in clinical ...
Cultural adaptations to a telephone genetic counseling ... - PMC
Culturally adapting interventions can improve health outcomes in historically marginalized populations and promote equity. Implications.
4.
researchgate.net
researchgate.net/publication/373329549_Cross-cultural_adaptation_of_the_Genetic_Counseling_Outcome_Scale_GCOS-24_for_use_in_Canada_A_qualitative_studyCross-cultural adaptation of the Genetic Counseling Outcome ...
The Genetic Counselling Outcome Scale (GCOS)-24 is a patient-reported outcome measure (PROM) developed and validated in the United Kingdom (UK).
Translation and Adaptation of the Genetic Counselling ...
Robust outcome measures are needed to provide evidence to support service development within genetic counseling. The Genetic Counselling Outcome ...
Cross-Cultural Adaptation and Validation of a French ...
This article reports on the cross-cultural adaptation and validation of a French version of the Genetic Counseling Satisfaction Scale (GCSS)
Adaptive Translation of the Genetic Counselling Outcome ...
This thesis reports the process of translating and culturally adapting the Genetic Counselling Outcome Scale to the Norwegian language and context (GCOS-24no).
Cross‐cultural validation of the genetic counseling outcome ...
This study confirmed the reliability and validity of K‐GCOS and may be used as basic data for assessing and improving Korean genetic counseling services.
Genetic counseling processes and strategies for racially ...
This review aims to identify genetic counseling strategies tailored for a diversity of racial and ethnic populations with the goal to find ways to improve ...
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