I. Tessaro et al., GENETIC TESTING FOR SUSCEPTIBILITY TO BREAST-CANCER - FINDINGS FROM WOMENS FOCUS GROUPS, Journal of women's health, 6(3), 1997, pp. 317-327
Before designing an intervention to assist women in making informed de
cisions about BRCA1 testing, we conducted focus groups with women who
had breast cancer and unaffected women whose relatives had it to bette
r understand women's knowledge, concerns about testing, and potential
influences and support needs in making a decision about genetic testin
g for susceptibility to breast cancer. Findings show a general lack of
knowledge about genetic testing for breast cancer and what it means t
o have a positive test result, a strong concern for family members, pa
rticularly daughters, to use information from testing to help them mak
e better decisions about their health and lifestyle choices, a strong
sense of altruism, particularly among affected women, about being test
ed to help other women, not just family, and various support needs sur
rounding the testing experience, including an active role for physicia
ns in the decision process. The major advantages to testing seem to be
for information that could help reduce uncertainty and assist with ma
king future decisions about medical treatment and plans for surveillan
ce and some lifestyle changes. The major disadvantages to testing were
concerns about confidentiality and loss of insurance, the lack of pro
ven options for women after testing, and stress from knowing one had t
he BRCA1 mutation. These focus group discussions show women's concerns
and ambivalence about genetic testing. We need to provide women with
balanced information about the positive and negative aspects of such t
esting, determine how best to involve physicians in women's decisions
about testing, consider the effects of testing on family relationships
, and provide more public education about what genetic testing is and
what it means.