Population screening for hereditary cancer syndromes: opinions from Amazon Mechanical Turks
AbstractThe current standard of care in genetic testing for hereditary cancer syndromes is to offer genetic testing to individuals who meet certain criteria based on personal and/or family history of cancer. With the recent advances in testing technology, it has become feasible to consider genetic testing on a wider scale. There has been a debate by experts in the field of cancer genetics of whether the family history-based approach should be supplemented or replaced with a population-screening based approach. The purpose of this study was to examine the interest level and motivations of individuals in the general population for genetic testing of genes associated with hereditary cancer as well as identify psychosocial implications. This study surveyed individuals in the dominant market of crowdsourcing used by researchers in the academic setting, Amazon Mechanical Turks. The majority of the participants in this study (73%, n = 861) indicated that they would currently be interested in taking a genetic test for cancer. After this initial interest question, the participants were presented with six possible result scenarios. After the scenarios were presented, the participants were again asked a question regarding interest level in genetic testing for hereditary cancer. Of the 861 participants who answered this question, 40 (4.9%) of those who initially indicated an interest on having genetic testing for hereditary cancer at some point in life, stated that they would never take such a genetic test. This data suggests that the need for informed consent and patient understanding of the test is needed. The survey responses indicated a wide variety of emotional and psychological stresses may occur as a result of genetic testing and indicates the need for additional support and resources to be in place before the implementation of a population-screening program for any genes related to hereditary cancer. A population-screening program for hereditary cancer would be a public health intervention with the goal of identifying all mutation-carriers. However, there could possibly be serious medical, psychosocial, ethical and legal ramifications should such a program like this be implemented before more research and serious thought is given into the proper infrastructure.
TypeUniversity of Pittsburgh ETD
Cross, Laura (2016) Population screening for hereditary cancer syndromes: opinions from Amazon Mechanical Turks. Master's Thesis, University of Pittsburgh.