The return of research results (RoR) remains a complex and well-debated issue. Despite the debate, actual data related to the experience of giving individual results back, and the impact these results may have on clinical care and health outcomes, is sorely lacking. Through the work of the Australian Pancreatic Cancer Genome Initiative (APGI) we: (1) delineate the pathway back to the patient where actionable research data were identified; and (2) report the clinical utilisation of individual results returned. Using this experience, we discuss barriers and opportunities associated with a comprehensive process of RoR in large-scale genomic research that may be useful for others developing their own policies.

Lost in translation: returning germline genetic results in genome-scale cancer research

Aldo Scarpa;Rita T. Lawlor;Stefania Beghelli;Vincenzo Corbo;Maria Scardoni;Claudio Bassi;
2017-01-01

Abstract

The return of research results (RoR) remains a complex and well-debated issue. Despite the debate, actual data related to the experience of giving individual results back, and the impact these results may have on clinical care and health outcomes, is sorely lacking. Through the work of the Australian Pancreatic Cancer Genome Initiative (APGI) we: (1) delineate the pathway back to the patient where actionable research data were identified; and (2) report the clinical utilisation of individual results returned. Using this experience, we discuss barriers and opportunities associated with a comprehensive process of RoR in large-scale genomic research that may be useful for others developing their own policies.
2017
Genomic data; Research ethics; Return of results; Whole-genome sequencing; Adult; Aged; Aged, 80 and over; Australia; Computer Simulation; DNA Mutational Analysis; Genomics; Humans; Middle Aged; Pancreatic Neoplasms; Genetic Predisposition to Disease; Genome, Human; Germ-Line Mutation
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11562/974890
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