This study is intended to inform debates and real-world decisions over the use of archived biospecimens by seeking to understand the views and expectations of cancer patients who contribute to biobanks. Investigators will address the question of whether stored biospecimens should be used in research when the methods and risks of modern scientific techniques were not well described in the original informed consent documents. The study involves focus groups and survey research among over 700 cancer patients at a major academic cancer center. Aims of the research are:
- To evaluate preferences and expectations among patients who contribute or who may contribute biospecimens for future research.
- To identify specific characteristics of the proposed research, informed consent documents, or potential or societal benefits that may impact patient views.
- To evaluate how sociodemographic and clinical differences correlate with views and preferences in this area.
This research will provide some of the first evidence of patient views and expectations regarding use of archived biospecimens when scientific and ethical standards have changed since the time of initial consent. Investigators anticipate that these data will directly inform the frequent debates over specific cases that confront research consortia involved in biobank research across the United States and internationally.