Literature DB >> 23391059

Do researchers have an obligation to actively look for genetic incidental findings?

Catherine Gliwa1, Benjamin E Berkman.   

Abstract

The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise to an obligation to look: high benefit to participants, lack of alternative access for participants, and reasonable burden on researchers. Our analysis indicates that there is no obligation to look for incidental findings today, but during the ongoing translation of genomic analysis from research to clinical care, this obligation may arise.

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Year:  2013        PMID: 23391059      PMCID: PMC4138545          DOI: 10.1080/15265161.2012.754062

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN: 1526-5161            Impact factor:   11.229


  35 in total

1.  Medical researchers' ancillary clinical care responsibilities.

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

2.  The ancillary-care responsibilities of medical researchers. An ethical framework for thinking about the clinical care that researchers owe their subjects.

Authors:  Henry S Richardson; Leah Belsky
Journal:  Hastings Cent Rep       Date:  2004 Jan-Feb       Impact factor: 2.683

Review 3.  Disclosure of individual genetic data to research participants: the debate reconsidered.

Authors:  Annelien L Bredenoord; Hester Y Kroes; Edwin Cuppen; Michael Parker; Johannes J M van Delden
Journal:  Trends Genet       Date:  2010-12-27       Impact factor: 11.639

4.  Ancillary-care responsibilities in observational research: two cases, two issues.

Authors:  N Dickert; K DeRiemer; P E Duffy; L Garcia-Garcia; T K Mutabingwa; B J Sina; P Tindana; R Lie
Journal:  Lancet       Date:  2007-03-10       Impact factor: 79.321

Review 5.  Genetic screening.

Authors:  Wylie Burke; Beth Tarini; Nancy A Press; James P Evans
Journal:  Epidemiol Rev       Date:  2011-06-27       Impact factor: 6.222

6.  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

7.  Incidental findings in genetics research using archived DNA.

Authors:  Ellen Wright Clayton
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

8.  Understanding incidental findings in the context of genetics and genomics.

Authors:  Mildred K Cho
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

9.  Taxonomizing, sizing, and overcoming the incidentalome.

Authors:  Isaac S Kohane; Michael Hsing; Sek Won Kong
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

10.  ACMG statement on direct-to-consumer genetic testing.

Authors: 
Journal:  Genet Med       Date:  2004 Jan-Feb       Impact factor: 8.822

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  42 in total

1.  From Sequence Data to Returnable Results: Ethical Issues in Variant Calling and Interpretation.

Authors:  Ingrid A Holm; Timothy W Yu; Steven Joffe
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-16

Review 2.  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

3.  Incomplete knowledge of the clinical context as a barrier to interpreting incidental genetic research findings.

Authors:  Gregory Costain; Anne S Bassett
Journal:  Am J Bioeth       Date:  2013       Impact factor: 11.229

4.  Finding Fault? Exploring Legal Duties to Return Incidental Findings in Genomic Research.

Authors:  Elizabeth R Pike; Karen H Rothenberg; Benjamin E Berkman
Journal:  Georgetown Law J       Date:  2014

Review 5.  Paediatric genomics: diagnosing rare disease in children.

Authors:  Caroline F Wright; David R FitzPatrick; Helen V Firth
Journal:  Nat Rev Genet       Date:  2018-02-05       Impact factor: 53.242

Review 6.  Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.

Authors:  Jeffrey R Botkin; John W Belmont; Jonathan S Berg; Benjamin E Berkman; Yvonne Bombard; Ingrid A Holm; Howard P Levy; Kelly E Ormond; Howard M Saal; Nancy B Spinner; Benjamin S Wilfond; Joseph D McInerney
Journal:  Am J Hum Genet       Date:  2015-07-02       Impact factor: 11.025

7.  A framework for analyzing the ethics of disclosing genetic research findings.

Authors:  Lisa Eckstein; Jeremy R Garrett; Benjamin E Berkman
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

8.  Short read (next-generation) sequencing: a tutorial with cardiomyopathy diagnostics as an exemplar.

Authors:  Jaya Punetha; Eric P Hoffman
Journal:  Circ Cardiovasc Genet       Date:  2013-07-14

9.  Harms of Deception in FMR1 Premutation Genotype-Driven Recruitment.

Authors:  Sam Doernberg; Sara Chandros Hull
Journal:  Am J Bioeth       Date:  2017-04       Impact factor: 11.229

10.  Grappling with genomic incidental findings in the clinical realm.

Authors:  Sara Chandros Hull; Benjamin E Berkman
Journal:  Chest       Date:  2014-02       Impact factor: 9.410

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