Geller G, Doksum T, Bernhardt B A, Metz S A
Department of Pediatrics, School of Medicine, Johns Hopkins University, Baltimore, Maryland 21205, USA.
Cancer Epidemiol Biomarkers Prev. 1999 Apr;8(4 Pt 2):377-83.
We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of breast cancer and assessed (a) their reasons for participating and (b) whether source of recruitment, desire to help research (altruism), and the need to communicate with their affected relative about testing distinguish those who did and those who did not complete each phase of our protocol.
We sent invitations to 403 women who had completed a questionnaire on BRCA1/2 testing, 178 of whom were considered high risk because they had more than one relative on the same side of the family with early-onset breast cancer.
Among the 132 high-risk respondents from the mid-Atlantic states (where testing was offered), 36% (n = 47) were interested in counseling. Those who actually attended counseling were more likely to have some college education, a higher perceived risk of breast cancer, and a greater fear of stigma and were less likely to have a daughter than those who did not attend. The reasons for attending that were rated "very important" were to learn about the test (80%), to have the test (43%), and to help research (38%). High-risk women were eligible for testing only if their affected relative was willing to be tested and tested positive. After the session, 83% intended to ask their affected relative to be tested, but only half of the affected relatives actually came for pretest counseling. The proportion of participants who ultimately involved an affected relative was 2.5 times higher among women from a clinical population (25%) than among those from a registry population (10%); in this latter population, an altruistic desire to help research was a greater motivator for participation than interest in being tested.
Source of recruitment influences both motivations to attend education and counseling and actual testing behavior. These results have implications for interpretation of findings from studies in research settings as well as for informed consent and decision-making in the context of family-based testing.
我们为乳腺癌风险增加的女性提供教育、咨询和基于家庭的BRCA1/2检测，并评估（a）她们参与的原因，以及（b）招募来源、帮助研究的意愿（利他主义），以及与受影响亲属就检测进行沟通的需求，是否能区分完成和未完成我们方案各阶段的人群。
我们向403名完成BRCA1/2检测问卷的女性发出邀请，其中178名被认为是高风险人群，因为她们在家族同一侧有不止一名早发性乳腺癌亲属。
在来自大西洋中部各州（提供检测的地区）的132名高风险受访者中，36%（n = 47）对咨询感兴趣。实际参加咨询的人比未参加的人更有可能接受过一些大学教育、认为自己患乳腺癌的风险更高、更害怕受到污名化，且女儿的可能性更小。被评为“非常重要”的参加原因包括了解检测（80%）、进行检测（43%）和帮助研究（38%）。高风险女性只有在其受影响亲属愿意接受检测且检测呈阳性时才有资格进行检测。咨询会后，83%的人打算要求其受影响亲属接受检测，但实际上只有一半的受影响亲属前来进行检测前咨询。临床人群中的女性最终涉及受影响亲属的比例（25%）是登记人群中女性（10%）的2.5倍；在后者中，帮助研究的利他意愿比接受检测的兴趣更能激发参与的积极性。
招募来源既影响参加教育和咨询的动机，也影响实际检测行为。这些结果对研究环境中研究结果的解释以及基于家庭检测背景下的知情同意和决策具有启示意义。
