Borry Pascal, Stultiëns Louise, Nys Herman, Dierickx Kris
Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Belgium.
Crit Rev Oncol Hematol. 2007 Dec;64(3):173-81. doi: 10.1016/j.critrevonc.2007.04.006. Epub 2007 Jun 5.
The objective of this article is to review the attitudes of different stakeholders (minors, parents, healthcare professionals, and relatives of affected individuals) towards predictive genetic testing of minors for familial breast cancer.
The databases PubMed, Google Scholar, Psychinfo, Biological Abstracts, Francis, Anthropological Index online, Web of Science, and Sociological Abstracts were searched using relevant key words; literature indexed up to May 2006 was considered. Studies were included if they were published in a peer-reviewed journal written in English and if they described the attitudes of the different stakeholders towards predictive genetic testing of minors for familial breast cancer. The results are presented in a summary form.
A total of 14 studies were included. The studies were very heterogeneous, using a variety of study populations, study designs, sample sizes, and study measures. Substantial proportions of adolescents were interested in learning whether they were at risk for familial breast cancer. The attitudes of healthcare professionals about testing minors diverged.
Our review has made clear that many respondents fail to understand potential risks related to predictive genetic testing in minors. Respondents might have overly positive expectations about possibilities for genetic testing. This emphasizes the need for genetic education and counselling about genetic testing in minors.
本文旨在综述不同利益相关者(未成年人、父母、医疗保健专业人员以及受影响个体的亲属)对未成年人进行家族性乳腺癌预测性基因检测的态度。
使用相关关键词检索了PubMed、谷歌学术、Psychinfo、生物学文摘、Francis、在线人类学索引、科学网和社会学文摘等数据库;纳入了截至2006年5月索引的文献。如果研究发表在同行评审的英文期刊上,并且描述了不同利益相关者对未成年人进行家族性乳腺癌预测性基因检测的态度,则将其纳入。结果以总结形式呈现。
共纳入14项研究。这些研究差异很大,采用了各种研究人群、研究设计、样本量和研究方法。相当比例的青少年有兴趣了解自己是否有患家族性乳腺癌的风险。医疗保健专业人员对检测未成年人的态度存在分歧。
我们的综述表明,许多受访者不了解与未成年人预测性基因检测相关的潜在风险。受访者可能对基因检测的可能性抱有过度积极的期望。这强调了对未成年人进行基因检测的基因教育和咨询的必要性。