Lehmann Lisa Soleymani, Weeks Jane C, Klar Neil, Garber Judy E
Massachusetts General Hospital, General Medicine Division, currently at Brigham and Women's Hospital, Division of General Medicine and Harvard Medical School, Division of Medical Ethics, Boston, Massachusetts 02115, USA.
Genet Med. 2002 Sep-Oct;4(5):346-52. doi: 10.1097/00125817-200209000-00005.
The Human Genome Project continues to produce an increasing number of genetic susceptibility tests. Some of these genetic tests target social or ethnic groups who are at increased risk of developing a disease. The Ashkenazi Jewish community is one ethnic group that is an ongoing subject of genetic investigation. We assessed the attitudes of a population-based sample of Ashkenazi Jewish women toward breast-ovarian cancer susceptibility testing (BRCA 1/2). In particular, we assessed concerns about group discrimination, perceptions of the advantages and disadvantages of testing, and the relationship between concerns about discrimination and the potential benefits of genetic testing.
A telephone survey of a population-based sample of 200 Jewish women.
A minority of women (17%) in this study expressed concern or discomfort with Jews being offered testing. Most women believed there were scientific reasons for testing Jews (71%), and only 5% of women felt that research that focused on Jews was bad for Jews as a group. Increased concern about genetic discrimination was associated with women who were highly educated (odds ratio 2.68). Forty percent of women surveyed were interested in testing, 40% were not interested, and 20% were uncertain about whether they would obtain testing. Increased interest in genetic testing was associated with a desire to obtain information about children's risk of disease and valuing information for its own sake.
The majority of a population-based sample of Jewish women did not express concerns about group discrimination resulting from genetic testing. Women who are highly educated are more concerned about genetic discrimination. There is significant variation among Jewish women's interest in breast cancer susceptibility testing.
人类基因组计划持续产生越来越多的基因易感性检测。其中一些基因检测针对的是患某种疾病风险增加的社会群体或种族群体。阿什肯纳兹犹太人群体就是一个持续受到基因研究的种族群体。我们评估了以阿什肯纳兹犹太女性为基础的样本群体对乳腺癌 - 卵巢癌易感性检测（BRCA 1/2）的态度。特别是，我们评估了对群体歧视的担忧、对检测利弊的看法，以及对歧视的担忧与基因检测潜在益处之间的关系。
对200名犹太女性的基于群体的样本进行电话调查。
在本研究中，少数女性（17%）对为犹太人提供检测表示担忧或不适。大多数女性认为为犹太人进行检测有科学依据（71%），只有5%的女性觉得专注于犹太人的研究对犹太人群体不利。对基因歧视的担忧增加与受过高等教育的女性相关（优势比为2.68）。40%接受调查的女性对检测感兴趣，40%不感兴趣，20%不确定是否会接受检测。对基因检测兴趣的增加与获取有关子女疾病风险信息的愿望以及出于信息本身的价值重视信息有关。
以犹太女性为基础的样本群体中的大多数人没有表达对基因检测导致群体歧视的担忧。受过高等教育的女性更担心基因歧视。犹太女性对乳腺癌易感性检测的兴趣存在显著差异。
