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Returning individual research results for genome sequences of pancreatic cancer.

Johns AL, Miller DK, Simpson SH, Gill AJ, Kassahn KS, Humphris JL, Samra JS, Tucker K, Andrews L, Chang DK, Waddell N, Pajic M, Pearson JV, Grimmond SM, Biankin AV, Zeps N.

Genome Med. 2014 May 29;6(5):42. doi: 10.1186/gm558. eCollection 2014.


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

Johns AL, McKay SH, Humphris JL, Pinese M, Chantrill LA, Mead RS, Tucker K, Andrews L, Goodwin A, Leonard C, High HA, Nones K, Patch AM, Merrett ND, Pavlakis N, Kassahn KS, Samra JS, Miller DK, Chang DK, Pajic M; Australian Pancreatic Cancer Genome Initiative, Pearson JV, Grimmond SM, Waddell N, Zeps N, Gill AJ, Biankin AV.

Genome Med. 2017 Apr 28;9(1):41. doi: 10.1186/s13073-017-0430-4.


Understanding pancreatic cancer genomes.

Cowley MJ, Chang DK, Pajic M, Johns AL, Waddell N, Grimmond SM, Biankin AV.

J Hepatobiliary Pancreat Sci. 2013 Aug;20(6):549-56. doi: 10.1007/s00534-013-0610-6. Review.


The needle in the haystack: international consortia and the return of individual research results.

Wallace SE.

J Law Med Ethics. 2011 Winter;39(4):631-9. doi: 10.1111/j.1748-720X.2011.00630.x.


An implementation framework for the feedback of individual research results and incidental findings in research.

Thorogood A, Joly Y, Knoppers BM, Nilsson T, Metrakos P, Lazaris A, Salman A.

BMC Med Ethics. 2014 Dec 23;15:88. doi: 10.1186/1472-6939-15-88.


Researcher practices on returning genetic research results.

Heaney C, Tindall G, Lucas J, Haga SB.

Genet Test Mol Biomarkers. 2010 Dec;14(6):821-7. doi: 10.1089/gtmb.2010.0066. Epub 2010 Oct 12.


Overview of the epidemiology methods and applications: strengths and limitations of observational study designs.

Colditz GA.

Crit Rev Food Sci Nutr. 2010;50 Suppl 1:10-2. doi: 10.1080/10408398.2010.526838.


IRB perspectives on the return of individual results from genomic research.

Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, Lewis S, Press N, Juengst E, Wiesner GL; GRRIP Consortium.

Genet Med. 2012 Feb;14(2):215-22. doi: 10.1038/gim.2011.10. Epub 2012 Jan 5.


Expect the unexpected: screening for secondary findings in clinical genomics research.

Mackley MP, Capps B.

Br Med Bull. 2017 Jun 1;122(1):109-122. doi: 10.1093/bmb/ldx009.


The project data sphere initiative: accelerating cancer research by sharing data.

Green AK, Reeder-Hayes KE, Corty RW, Basch E, Milowsky MI, Dusetzina SB, Bennett AV, Wood WA.

Oncologist. 2015 May;20(5):464-e20. doi: 10.1634/theoncologist.2014-0431. Epub 2015 Apr 15.


Risk management frameworks for human health and environmental risks.

Jardine C, Hrudey S, Shortreed J, Craig L, Krewski D, Furgal C, McColl S.

J Toxicol Environ Health B Crit Rev. 2003 Nov-Dec;6(6):569-720. Review.


American Society of Clinical Oncology policy statement: oversight of clinical research.

American Society of Clinical Oncology.

J Clin Oncol. 2003 Jun 15;21(12):2377-86. Epub 2003 Apr 29.


Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium.

Berg JS, Amendola LM, Eng C, Van Allen E, Gray SW, Wagle N, Rehm HL, DeChene ET, Dulik MC, Hisama FM, Burke W, Spinner NB, Garraway L, Green RC, Plon S, Evans JP, Jarvik GP; Members of the CSER Actionability and Return of Results Working Group.

Genet Med. 2013 Nov;15(11):860-7. doi: 10.1038/gim.2013.133. Epub 2013 Oct 24. Review. Erratum in: Genet Med. 2014 Feb;16(2):203.


American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.

American Society of Clinical Oncology.

J Clin Oncol. 2003 Jun 15;21(12):2397-406. Epub 2003 Apr 11.


How, who, and when: preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age.

Kaphingst KA, Ivanovich J, Elrick A, Dresser R, Matsen C, Goodman MS.

Mol Genet Genomic Med. 2016 Oct 24;4(6):684-695. eCollection 2016 Nov.


Models of consent to return of incidental findings in genomic research.

Appelbaum PS, Parens E, Waldman CR, Klitzman R, Fyer A, Martinez J, Price WN 2nd, Chung WK.

Hastings Cent Rep. 2014 Jul-Aug;44(4):22-32. doi: 10.1002/hast.328. Epub 2014 Jun 11.


When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results.

Miller FA, Giacomini M, Ahern C, Robert JS, de Laat S.

BMC Med Ethics. 2008 Feb 22;9:4. doi: 10.1186/1472-6939-9-4.


Experiences and attitudes of genome investigators regarding return of individual genetic test results.

Ramoni RB, McGuire AL, Robinson JO, Morley DS, Plon SE, Joffe S.

Genet Med. 2013 Nov;15(11):882-7. doi: 10.1038/gim.2013.58. Epub 2013 May 2.

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