Literature DB >> 18547194

Incidental findings in human subjects research: what do investigators owe research participants?

Franklin G Miller1, Michelle M Mello, Steven Joffe.   

Abstract

The use of brain imaging technology as a common tool of research has spawned concern and debate over how investigators should respond to incidental findings discovered in the course of research. In this article, we argue that investigators have an obligation to respond to incidental findings in view of their entering into a professional relationship with research participants in which they are granted privileged access to private information with potential relevance to participants' health. We discuss the scope and limits of this professional obligation to respond to incidental findings, bearing in mind that the relationship between investigators and research participants differs fundamentally from the doctor-patient relationship.

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Year:  2008        PMID: 18547194      PMCID: PMC2610459          DOI: 10.1111/j.1748-720X.2008.00269.x

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  14 in total

1.  Ethical and practical considerations in managing incidental findings in functional magnetic resonance imaging.

Authors:  Judy Illes; John E Desmond; Lynn F Huang; Thomas A Raffin; Scott W Atlas
Journal:  Brain Cogn       Date:  2002-12       Impact factor: 2.310

2.  Medical researchers' ancillary clinical care responsibilities.

Authors:  Leah Belsky; Henry S Richardson
Journal:  BMJ       Date:  2004-06-19

3.  The clinical investigator as fiduciary: discarding a misguided idea.

Authors:  E Haavi Morreim
Journal:  J Law Med Ethics       Date:  2005       Impact factor: 1.718

4.  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

5.  Subjects' expectations in neuroimaging research.

Authors:  Matthew P Kirschen; Agnieszka Jaworska; Judy Illes
Journal:  J Magn Reson Imaging       Date:  2006-02       Impact factor: 4.813

6.  Discovery and disclosure of incidental findings in neuroimaging research.

Authors:  Judy Illes; Matthew P Kirschen; Kim Karetsky; Megan Kelly; Arnold Saha; John E Desmond; Thomas A Raffin; Gary H Glover; Scott W Atlas
Journal:  J Magn Reson Imaging       Date:  2004-11       Impact factor: 4.813

7.  Ethics. Incidental findings in brain imaging research.

Authors:  Judy Illes; Matthew P Kirschen; Emmeline Edwards; L R Stanford; Peter Bandettini; Mildred K Cho; Paul J Ford; Gary H Glover; Jennifer Kulynych; Ruth Macklin; Daniel B Michael; Susan M Wolf
Journal:  Science       Date:  2006-02-10       Impact factor: 47.728

8.  Incidental neuroimaging findings: lessons from brain research in volunteers.

Authors:  Andreas Kleinschmidt
Journal:  Curr Opin Neurol       Date:  2007-08       Impact factor: 5.710

9.  Professional and public attitudes towards unsolicited medical intervention.

Authors:  M Zwitter; T Nilstun; L E Knudsen; B Zakotnik; J Klocker; S Bremberg; G Frentz; U Klocker-Kaiser; J Pedersen
Journal:  BMJ       Date:  1999-01-23

Review 10.  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

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  50 in total

1.  Management of incidental findings during imaging research in "healthy" volunteers: current UK practice.

Authors:  T C Booth; A D Waldman; J M Wardlaw; S A Taylor; A Jackson
Journal:  Br J Radiol       Date:  2011-09-21       Impact factor: 3.039

Review 2.  To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2012-06-27       Impact factor: 4.246

Review 3.  Incidental findings found in "healthy" volunteers during imaging performed for research: current legal and ethical implications.

Authors:  T C Booth; A Jackson; J M Wardlaw; S A Taylor; A D Waldman
Journal:  Br J Radiol       Date:  2010-03-24       Impact factor: 3.039

4.  Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

Authors:  Anya E R Prince; John M Conley; Arlene M Davis; Gabriel Lázaro-Muñoz; R Jean Cadigan
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

5.  Secondary variants--in defense of a more fitting term in the incidental findings debate.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2013-05-22       Impact factor: 4.246

6.  The ethics of biobanking: key issues and controversies.

Authors:  Heather Widdows; Sean Cordell
Journal:  Health Care Anal       Date:  2011-09

7.  Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Hilde Van Esch; Kris Dierickx
Journal:  Med Health Care Philos       Date:  2015-08

Review 8.  Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.

Authors:  Ruqayyah Abdul-Karim; Benjamin E Berkman; David Wendler; Annette Rid; Javed Khan; Tom Badgett; Sara Chandros Hull
Journal:  Pediatrics       Date:  2013-02-11       Impact factor: 7.124

9.  A Social Constructivism Decision-Making Approach to Managing Incidental Findings in Neuroimaging Research.

Authors:  Marcie L King
Journal:  Ethics Behav       Date:  2017-04-17

10.  Using CT colonography as a triage technique after a positive faecal occult blood test in colorectal cancer screening.

Authors:  M H Liedenbaum; A F van Rijn; A H de Vries; H M Dekker; M Thomeer; C J van Marrewijk; L Hol; M G W Dijkgraaf; P Fockens; P M M Bossuyt; E Dekker; J Stoker
Journal:  Gut       Date:  2009-07-21       Impact factor: 23.059

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