Psychosocial dimensions of BRCA testing: an overshadowed issue

Abstract

Routine cancer susceptibility testing will soon be feasible in clinical practice. However, to date, this new technology has entailed many limitations, including potential adverse psychosocial consequences. Empirical studies examining these psychosocial aspects are strikingly scarce, especially in continental European countries. Are we prepared for managing the psychosocial problems that emerge from widespread introduction of this practice? Current research do not take into account cross-cultural variations in attitudes and reactions towards genetic testing. This paper points to the urgent need for obtaining a more accurate picture on the psychosocial aspects of breast cancer gene testing and disclosure in order to design recommendations for implementation in populations with highly variable cultural and legal background.

Genetic testing for breast and ovarian cancer susceptibility: a family experience

“…Potential risks of genetic testing for breast and ovarian cancer susceptibility include: psychological distress, potential loss of privacy, change in family dynamics, potential for genetic discrimination, increased medical expenses due to additional screening and surveillance, and a false sense of security 28,31,52,54,56‐60 . Findings from a recent review of the literature concerning the psychological implications of genetic testing suggest that the severity of psychological risks posed by genetic testing may not be as great as was originally anticipated 61 .…”

“…Findings from a recent review of the literature concerning the psychological implications of genetic testing suggest that the severity of psychological risks posed by genetic testing may not be as great as was originally anticipated 61 . However, certain subgroups of individuals may be more vulnerable to adverse effects 55,56,62 . Feelings of guilt may be experienced by both carriers and non‐carriers of the BRCA mutation.…”

The Impact of BRCA1/2 Mutation Testing on Patients and Family Members

“…Little research has been previously undertaken on the psychosocial aspects of BRCA testing and compliance of carriers and their families to healthcare provider recommendations [9]. Several studies have analyzed the impact of BRCA testing on anxiety, depression, breast self-examination frequency, potential employment and insurance discrimination [5,9,10,11,12] and evaluated the level of interest in such a test especially among first-degree relatives of breast cancer patients [2,5,13]. Our survey aimed to identify the sources of referral and the consequences of genetic counseling and BRCA testing conducted among Jewish women of Ashkenazi and non-Ashkenazi descent.…”

Ethical Concerns of Direct-to-Consumer Genetic Tests

“…One study shows that inadequate provision of genetic health risk information without a health care intermediary can lead to potential psychological effects in DTC genetic testing consumers (Broady et al, 2018). Also, receiving a positive result for a hereditary disease can lead to psychological distress such as anxiety, depression, grief, suicidal thoughts, guilt, and concern for children (Brédart et al, 2001).…”