The impact of receiving genetic test results on general and cancer‐specific psychologic distress among members of an African‐American kindred with a BRCA1 mutation

Abstract

BACKGROUNDNumerous studies have examined short‐term and long‐term psychologic responses to genetic testing for breast/ovarian carcinoma susceptibility in clinic samples and among families who participated in genetic linkage studies. However, to the authors' knowledge, the vast majority of studies focused on non‐Latino whites and women. In this prospective study, the authors investigated the psychologic impact of receiving carrier‐specific BRCA1 test results as part of a genetic education/counseling intervention in female and male members of an African‐American kindred with a BRCA1 mutation.METHODSEighty‐five of 101 participating kindred members (84%) underwent genetic counseling/education and testing according to an established protocol. Participants completed in‐person or telephone‐administered, computer‐assisted interviews. At baseline and after the receipt of test results (1 mo, 4 mos, and 12 mos), general psychologic distress (i.e., anxiety and depression) and cancer‐specific distress were measured. Statistical analyses were performed using linear mixed‐model approaches for longitudinal data.RESULTSThe hypothesis that mutation carriers, particularly women who had no personal history of breast carcinoma, were expected to report greater distress than noncarriers was not supported. After controlling for socioeconomic status and personal history of breast/ovarian carcinoma, noncarriers reported significant declines in the distress measures (depressive symptoms, anxiety and cancer‐related worries), whereas distress was not altered markedly in carriers after genetic risk notification.CONCLUSIONSThe current findings suggested that individuals receiving BRCA1 test results who learn that they are not carriers of a deleterious mutation may experience psychologic benefits. Furthermore, those who learned that they were mutation carriers did not appear to have adverse, clinically meaningful psychologic outcomes. Cancer 2005. © 2005 American Cancer Society.

A systematic review of perceived risks, psychological and behavioral impacts of genetic testing

“…43 For HBOC, 13 studies reported no difference between pretest and posttest anxiety levels among carriers at 12 months. One study found that anxiety had decreased 1 month posttest, 11 a second larger study found it had increased at 2 weeks, 30 and a third found increased levels of anxiety at 5 years when compared with 1 year. 21 Results were similar for noncarriers, with the majority of studies reporting no effect of testing on anxiety levels.…”

“…In three instances, two separate studies were published using data collected from one large population. 11,12 However, because each study seemed to use different subsamples from the one larger population, or reported different outcome measures in each article, they were considered as separate studies.…”

“…In total, 16 studies assessed the impacts of genetic testing for hereditary breast and ovarian cancer (HBOC), [11][12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29][30] 11 for HNPCC, [31][32][33][34][35][36][37][38][39][40][41] one for both HBOC and HNPCC, 42 and two for AD. 43,44 In the studies on HBOC, the vast majority of participants were female.…”

Social‐cognitive aspects of underserved Latinas preparing to undergo genetic cancer risk assessment for hereditary breast and ovarian cancer

“…Genetic susceptibility to breast cancer has been identified in various races and ethnicities [5][6][7][8][9][10][11][12]. However, the majority of research on genetic cancer risk assessment (GCRA) for hereditary breast and ovarian cancer has been conducted in predominantly non-Latino white samples, and most ethnic minority studies focus on the prevalence of BRCA mutations and genetic testing attitudes and motivation among African American cohorts [12][13][14][15][16][17][18][19][20]. Although the few studies focused on Latinos and GCRA have found that Latinos may have low knowledge [21][22][23] and negative perceptions [24] of cancer genetic testing, others have identified positive attitudes and interest in participating in cancer genetic services and testing [23,25].…”

Effect of Genetic Counseling and Testing for <i>BRCA1</i> and <i>BRCA2</i> Mutations in African American Women: A Randomized Trial

“…To our knowledge, only a single observational study has evaluated the impact of genetic counseling and testing among African Americans who were members of one BRCA1 kindred [9]. This study, which provided participants with culturally targeted education materials, found that receiving BRCA1 test results did not lead to adverse psychological functioning.…”