<p>Individuals who receive a pathogenic result from hereditary cancer genetic testing face challenges effectively sharing this information with their relatives, leading to low rates of familial cascade testing. Communication of a cancer predisposition and subsequent familial testing is important, so at-risk relatives can receive appropriate medical screenings and risk-reducing interventions. While barriers and facilitators to cascade testing have been explored primarily among individuals who are White and report higher incomes, they have not been thoroughly assessed among other groups. This study explored the experiences of Black women sharing their pathogenic cancer genetic test results with their relatives. All eight participants had received genetic counseling and testing at Grady Memorial Hospital, an academic safety net hospital in Atlanta, Georgia. Participants completed semi-structured interviews about barriers and facilitators they experienced while disclosing their genetic test results to relatives. Interviews were independently coded amongst two coders (RA/JP), thematic content analysis was performed, and a pooled Cohen’s Kappa of 0.69 was obtained. Notable barriers to disclosure included distrust in the accuracy of genetic testing results and misconceptions such as perm products causing heritable gene mutations. Unique facilitators of cascade testing include feelings of empowerment and reliance on personal faith as a coping strategy before sharing results. Participants provided suggestions to improve the cascade testing process, such as family result sessions and community awareness events. Genetic counselors can utilize these unique facilitators and barriers to cascade testing to provide culturally appropriate care and to improve communication of results among families receiving hereditary cancer testing.</p>

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Exploration of familial genetic test result communication among Black women within an academic safety net hospital

  • Ruchi Aluwalia,
  • Nadia Ali,
  • Christine Stanislaw,
  • Regina Leonis,
  • Jade Jones,
  • Jamie Paysour

摘要

Individuals who receive a pathogenic result from hereditary cancer genetic testing face challenges effectively sharing this information with their relatives, leading to low rates of familial cascade testing. Communication of a cancer predisposition and subsequent familial testing is important, so at-risk relatives can receive appropriate medical screenings and risk-reducing interventions. While barriers and facilitators to cascade testing have been explored primarily among individuals who are White and report higher incomes, they have not been thoroughly assessed among other groups. This study explored the experiences of Black women sharing their pathogenic cancer genetic test results with their relatives. All eight participants had received genetic counseling and testing at Grady Memorial Hospital, an academic safety net hospital in Atlanta, Georgia. Participants completed semi-structured interviews about barriers and facilitators they experienced while disclosing their genetic test results to relatives. Interviews were independently coded amongst two coders (RA/JP), thematic content analysis was performed, and a pooled Cohen’s Kappa of 0.69 was obtained. Notable barriers to disclosure included distrust in the accuracy of genetic testing results and misconceptions such as perm products causing heritable gene mutations. Unique facilitators of cascade testing include feelings of empowerment and reliance on personal faith as a coping strategy before sharing results. Participants provided suggestions to improve the cascade testing process, such as family result sessions and community awareness events. Genetic counselors can utilize these unique facilitators and barriers to cascade testing to provide culturally appropriate care and to improve communication of results among families receiving hereditary cancer testing.