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Literature DB >> 22814848

Reporting actionable research results: shared secrets can save lives.

Lawrence E Hunter¹, Christian Hopfer, Sharon F Terry, Marilyn E Coors.

Abstract

In this Commentary, we describe a cryptographic method for returning research results to individuals who participate in clinical studies. Controlled use of this method, which relaxes the typical anonymization guarantee, can ensure that clinically actionable results reach participants while also addressing most privacy concerns.

Entities: Disease Species

Mesh：

Year: 2012 PMID： 22814848 PMCID： PMC3501742 DOI： 10.1126/scitranslmed.3003958

Source DB: PubMed Journal: Sci Transl Med ISSN： 1946-6234 Impact factor: 17.956

33 in total

1. Disclosing individual results of clinical research: implications of respect for participants.

Authors: David I Shalowitz; Franklin G Miller
Journal: JAMA Date: 2005-08-10 Impact factor: 56.272

2. To know or not to know? Genetic ignorance, autonomy and paternalism.

Authors: Jane Wilson
Journal: Bioethics Date: 2005-10 Impact factor: 1.898

3. Disclosing individual genetic results to research participants.

Authors: Vardit Ravitsky; Benjamin S Wilfond
Journal: Am J Bioeth Date: 2006 Nov-Dec Impact factor: 11.229

Review 4. Using human samples in proteomics-based drug development: bioethical aspects.

Authors: Grit Nestler; Ralf Steinert; Hans Lippert; Marc A Reymond
Journal: Expert Rev Proteomics Date: 2004-06 Impact factor: 3.940

5. Medicine. Reestablishing the researcher-patient compact.

Authors: Isaac S Kohane; Kenneth D Mandl; Patrick L Taylor; Ingrid A Holm; Daniel J Nigrin; Louis M Kunkel
Journal: Science Date: 2007-05-11 Impact factor: 47.728

6. Survival of patients with stage I lung cancer detected on CT screening.

Authors: Claudia I Henschke; David F Yankelevitz; Daniel M Libby; Mark W Pasmantier; James P Smith; Olli S Miettinen
Journal: N Engl J Med Date: 2006-10-26 Impact factor: 91.245

7. The emergence of an ethical duty to disclose genetic research results: international perspectives.

Authors: Bartha Maria Knoppers; Yann Joly; Jacques Simard; Francine Durocher
Journal: Eur J Hum Genet Date: 2006-07-26 Impact factor: 4.246

8. Variations in lung cancer risk among smokers.

Authors: Peter B Bach; Michael W Kattan; Mark D Thornquist; Mark G Kris; Ramsey C Tate; Matt J Barnett; Lillian J Hsieh; Colin B Begg
Journal: J Natl Cancer Inst Date: 2003-03-19 Impact factor: 13.506

Review 9. Managing incidental findings in human subjects research: analysis and recommendations.

Authors: Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal: J Law Med Ethics Date: 2008 Impact factor: 1.718

10. Managing incidental findings and research results in genomic research involving biobanks and archived data sets.

Authors: Susan M Wolf; Brittney N Crock; Brian Van Ness; Frances Lawrenz; Jeffrey P Kahn; Laura M Beskow; Mildred K Cho; Michael F Christman; Robert C Green; Ralph Hall; Judy Illes; Moira Keane; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Bonnie Leroy; Karen J Maschke; William McGeveran; Pilar Ossorio; Lisa S Parker; Gloria M Petersen; Henry S Richardson; Joan A Scott; Sharon F Terry; Benjamin S Wilfond; Wendy A Wolf
Journal: Genet Med Date: 2012-04 Impact factor: 8.822

3 in total

Review 1. The long tail and rare disease research: the impact of next-generation sequencing for rare Mendelian disorders.

Authors: Tony Shen; Ariel Lee; Carol Shen; C Jimmy Lin
Journal: Genet Res (Camb) Date: 2015-09-14 Impact factor: 1.588

2. Legal & ethical compliance when sharing biospecimen.

Authors: Tomas Klingstrom; Erik Bongcam-Rudloff; Jane Reichel
Journal: Brief Funct Genomics Date: 2018-01-01 Impact factor: 4.241

3. To Share or Not to Share: Ethical Acquisition and Use of Medical Data.

Authors: Kate Fultz Hollis
Journal: AMIA Jt Summits Transl Sci Proc Date: 2016-07-20

3 in total