Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, Pennsylvania.
Cancer Prev Res (Phila). 2020 Mar;13(3):219-222. doi: 10.1158/1940-6207.CAPR-19-0267.
The Risk Assessment Program (RAP) at Fox Chase Cancer Center (Philadelphia, PA) is a multi-generational prospective cohort, enhanced for personal and family history of cancer, consisting of over 10,000 individuals for whom data on personal and family history of cancer, risk factors, genetic and genomic data, health behaviors, and biospecimens are available. The RAP has a broad research agenda including the characterization of genes with known or potential relevance to cancer, gene-gene and gene-environment interactions, and their contribution to clinically useful risk assessment and risk reduction strategies. Increasingly, this body of research is identifying genetic changes which may have clinical significance for RAP research participants, leading us to confront the issue of whether to return genetic results emerging from research laboratories. This review will describe some of the important fundamental points that must be debated as we develop a paradigm for return of research results. The key issues to address as the scientific community moves toward adopting a policy of return of research results include the best criteria for determining which results to offer, the consent document components necessary to ensure that the participant makes a truly informed decision about receiving their results, and associated logistical and cost challenges..
福克斯蔡斯癌症中心（费城，宾夕法尼亚州）的风险评估计划（RAP）是一个多代前瞻性队列，针对癌症个人和家族史进行了增强，包括超过 10000 个人，他们提供了有关癌症个人和家族史、风险因素、遗传和基因组数据、健康行为和生物样本的数据。RAP 有广泛的研究议程，包括具有已知或潜在癌症相关性的基因特征、基因-基因和基因-环境相互作用，以及它们对临床有用的风险评估和降低风险策略的贡献。越来越多的研究正在确定可能对 RAP 研究参与者具有临床意义的遗传变化，这使我们不得不面对从研究实验室中出现的遗传结果是否要返回的问题。本综述将描述在我们制定研究结果返回范例时必须争论的一些重要要点。随着科学界朝着返回研究结果的政策发展，需要解决的关键问题包括确定要提供哪些结果的最佳标准、确保参与者对接收结果做出真正知情决策所需的同意书组成部分，以及相关的后勤和成本挑战。
