The findings of this study provide a more nuanced, contingent, and contextual articulation, suggesting a construct we termed “stepwise knowledge”: participants felt that the knowledge/information necessary to make an informed decision to be tested is not the same as the knowledge/information needed after being identified as a carrier. The bioethical literature on genetic testing has emphasized a dichotomous view of autonomy: choosing either to know or not to know. Interestingly, streamlining was perceived as offering just the right amount of information at the right time.

We also explored participants’ views on the streamlined testing process: pretest written information and post-test genetic counseling only for carriers and for noncarriers with a significant family history. I don’t see what disadvantage there could be to having a test that could save your life.” (59-year-old female noncarrier, low-likelihood family history).

“If it becomes routine, it won’t be so stressful because everyone will be having it…you won’t be exceptional for having the test…it doesn’t mean you are sick. Such institutionalization and normalization were regarded positively, as a means of reducing possible social labeling and personal stigma. A typical argument voiced by respondents was that BRCA screening should become part of routine, age-related medical surveillance. The second explained that although she tells others of her own positive testing experience, she does not feel that she can make recommendations for others. One did not feel qualified to provide an opinion because he was a recent immigrant to Israel. Two of these three carriers, although satisfied with their own decision to be tested, would not recommend general screening. , limited information is sufficient-if you want to learn more, finding information is no problem, we’re flooded by information.” (59-year-old female noncarrier, low-likelihood family history) Concerns regarding the pretest processĪll the respondents except for three carriers said they would recommend general BRCA screening for AJ. Why ‘put a healthy head in a sick bed’ to begin with? All the information I needed, I received with the results.” (37-year-old carrier, moderate-likelihood family history) “There is a big difference between someone who comes for counseling because they think there is a genetic problem and want to make sure, and someone going for screening.

Participants advocated stepwise provision of information, with detailed information given when it becomes personally pertinent, following a positive test result: “I can now take more precautions and make sure that I don’t get something bad…For me, the way in which it worked was terrific. Excessive pretest information was viewed as unnecessary and possibly burdensome, causing untoward anxiety: “looking for trouble” and “making people anxious about something they might not have.” This would potentially prevent participation in screening, which respondents viewed as important to promote.

Atlasti title and abstract screening