DeMarco Tiffani A, Loffredo Christopher A, Sampilo Marilyn L, Tercyak Kenneth P
Cancer Control Program, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, District of Columbia 20007-2401, USA.
J Genet Couns. 2006 Apr;15(2):129-36. doi: 10.1007/s10897-005-9006-3.
The goals of this research were to describe the process of identifying and recruiting individuals registered with a cancer center's cancer registry who were eligible to participate in cancer genetic research. This study specifically focused on younger women with personal and family cancer histories strongly suggestive of hereditary breast cancer syndromes, as determined by genetic counselor review. Of special interest was to determine the proportion of women from minority backgrounds who were (a) identifiable in this manner and (b) interested in genetic testing for hereditary breast cancer through a family cancer clinical research program. An initial query of the 292 cases of women newly affected with breast cancer and contained within the registry indicated that 124 met demographic eligibility criteria. The personal and family cancer histories of each of these women were then reviewed by a genetic counselor and the remaining, eligible patients (n = 31) were subsequently contacted by mail and telephone: approximately three-fifths (18/31) of these patients were White and two-fifths (13/31) were Black or of another racial background. Of the women who were sent one or more study-related mailings, 10% (3/31) were unreachable by telephone due to incorrect contact information, 32% (10/31) were reachable by telephone but unresponsive to messages left, 26% (8/31) had already participated in the family cancer program (i.e., were positive controls), 6% (2/31) were interested in participating in the program, 23% (7/31) were uninterested in participating in the program, and 3% (1/31) were later determined to be ineligible. Comparing the racial backgrounds of women who were either positive controls or interested in participating (i.e., "tester" category) to women who were either unreachable, nonresponsive, uninterested, or ineligible (i.e., "nontester" category), there was a nonsignificant trend for more non-White women to fall into the nontester than tester category, Fisher's Exact Test = .09. This work underscores practical steps in planning and carrying-out cancer genetic testing research among women newly affected with breast cancer and members of special populations. It also underscores the role that genetic counseling professionals play in this process.
本研究的目标是描述识别和招募在癌症中心癌症登记处注册且有资格参与癌症基因研究的个体的过程。本研究特别关注那些经遗传咨询师评估，个人和家族癌症病史强烈提示遗传性乳腺癌综合征的年轻女性。特别感兴趣的是确定来自少数族裔背景的女性中，(a) 以这种方式可识别的比例，以及 (b) 通过家庭癌症临床研究项目对遗传性乳腺癌基因检测感兴趣的比例。对登记处记录的292例新患乳腺癌的女性病例进行初步查询后发现，124例符合人口统计学资格标准。随后，遗传咨询师对这些女性每人的个人和家族癌症病史进行了审查，并通过邮件和电话联系了其余符合条件的患者（n = 31）：这些患者中约五分之三（18/31）为白人，五分之二（13/31）为黑人或其他种族背景。在收到一份或多份与研究相关邮件的女性中，10%（3/31）因联系信息错误无法通过电话联系到，32%（10/31）可通过电话联系到但未回复留下的信息，26%（8/31）已参加过家庭癌症项目（即作为阳性对照），6%（2/31）有兴趣参加该项目，23%（7/31）对参加该项目不感兴趣，3%（1/31）后来被确定不符合条件。将作为阳性对照或有兴趣参加（即“测试者”类别）的女性的种族背景与无法联系到、无反应、不感兴趣或不符合条件（即“非测试者”类别）的女性进行比较，非白人女性更多地属于非测试者类别而非测试者类别，这一趋势无统计学意义，费舍尔精确检验 = 0.09。这项工作强调了在新患乳腺癌的女性和特殊人群成员中规划和开展癌症基因检测研究的实际步骤。它还强调了遗传咨询专业人员在这一过程中所起的作用。
