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    Returning individual research results for genome sequences of pancreatic cancer

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    12
    Author
    Johns, AL; Miller, DK; Simpson, SH; Gill, AJ; Kassahn, KS; Humphris, JL; Samra, JS; Tucker, K; Andrews, L; Chang, DK; ...
    Date
    2014-05-29
    Source Title
    Genome Medicine: medicine in the post-genomic era
    Publisher
    BIOMED CENTRAL LTD
    University of Melbourne Author/s
    Grimmond, Sean
    Affiliation
    Centre for Cancer Research
    Metadata
    Show full item record
    Document Type
    Journal Article
    Citations
    Johns, A. L., Miller, D. K., Simpson, S. H., Gill, A. J., Kassahn, K. S., Humphris, J. L., Samra, J. S., Tucker, K., Andrews, L., Chang, D. K., Waddell, N., Pajic, M., Pearson, J. V., Grimmond, S. M., Biankin, A. V. & Zeps, N. (2014). Returning individual research results for genome sequences of pancreatic cancer. GENOME MEDICINE, 6 (5), https://doi.org/10.1186/gm558.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/260128
    DOI
    10.1186/gm558
    Abstract
    BACKGROUND: Disclosure of individual results to participants in genomic research is a complex and contentious issue. There are many existing commentaries and opinion pieces on the topic, but little empirical data concerning actual cases describing how individual results have been returned. Thus, the real life risks and benefits of disclosing individual research results to participants are rarely if ever presented as part of this debate. METHODS: The Australian Pancreatic Cancer Genome Initiative (APGI) is an Australian contribution to the International Cancer Genome Consortium (ICGC), that involves prospective sequencing of tumor and normal genomes of study participants with pancreatic cancer in Australia. We present three examples that illustrate different facets of how research results may arise, and how they may be returned to individuals within an ethically defensible and clinically practical framework. This framework includes the necessary elements identified by others including consent, determination of the significance of results and which to return, delineation of the responsibility for communication and the clinical pathway for managing the consequences of returning results. RESULTS: Of 285 recruited patients, we returned results to a total of 25 with no adverse events to date. These included four that were classified as medically actionable, nine as clinically significant and eight that were returned at the request of the treating clinician. Case studies presented depict instances where research results impacted on cancer susceptibility, current treatment and diagnosis, and illustrate key practical challenges of developing an effective framework. CONCLUSIONS: We suggest that return of individual results is both feasible and ethically defensible but only within the context of a robust framework that involves a close relationship between researchers and clinicians.

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