Literature DB >> 18547196

Incidental findings in genetics research using archived DNA.

Ellen Wright Clayton1.   

Abstract

Despite calls by some commentators for disclosing incidental findings in genetics research, several factors weigh in favor of caution. The technology of genetics has the power to uncover a vast array of information. The most potent argument for restraint in disclosure is that much research is pursued without consent so that the individual participant may not know that research is being conducted at all. Often the work is done by investigators and at institutions with which the person has no prior contact. Past practice is also relevant; genetics researchers historically have chosen not to disclose incidental findings, of which misattributed paternity and pleiotropic alleles such as ApoE have been the most common. Many people choose not to have genetic tests when given a choice. It may be desirable to discuss the topic of incidental findings when consent for research is obtained, but given the risk of unwanted surprise when there has been no prior discussion, the potential utility of incidental findings should be very high before they are even offered to individuals.

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Year:  2008        PMID: 18547196      PMCID: PMC2576744          DOI: 10.1111/j.1748-720X.2008.00271.x

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


  29 in total

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Journal:  Am J Med Genet       Date:  2000-08-14

2.  Data withholding in academic genetics: evidence from a national survey.

Authors:  Eric G Campbell; Brian R Clarridge; Manjusha Gokhale; Lauren Birenbaum; Stephen Hilgartner; Neil A Holtzman; David Blumenthal
Journal:  JAMA       Date:  2002 Jan 23-30       Impact factor: 56.272

3.  DNA banking and informed consent -- part 1.

Authors:  Robert F Weir; Jay R Horton
Journal:  IRB       Date:  1995 Jul-Aug

4.  Disclosing misattributed paternity.

Authors:  Lainie Friedman Ross
Journal:  Bioethics       Date:  1996-04       Impact factor: 1.898

Review 5.  Genetic evaluation for coronary artery disease.

Authors:  Maren T Scheuner
Journal:  Genet Med       Date:  2003 Jul-Aug       Impact factor: 8.822

6.  Informed consent for population-based research involving genetics.

Authors:  L M Beskow; W Burke; J F Merz; P A Barr; S Terry; V B Penchaszadeh; L O Gostin; M Gwinn; M J Khoury
Journal:  JAMA       Date:  2001-11-14       Impact factor: 56.272

7.  The question not asked: the challenge of pleiotropic genetic tests.

Authors:  Robert Wachbroit
Journal:  Kennedy Inst Ethics J       Date:  1998-06

8.  Do they understand? (part I): parental consent for children participating in clinical anesthesia and surgery research.

Authors:  Alan R Tait; Terri Voepel-Lewis; Shobha Malviya
Journal:  Anesthesiology       Date:  2003-03       Impact factor: 7.892

9.  Informed consent: patients listen and read, but what information do they retain?

Authors:  Perry Turner; Chris Williams
Journal:  N Z Med J       Date:  2002-10-25

10.  Attitudes and perceptions of patients towards methods of establishing a DNA biobank.

Authors:  Jill M Pulley; Margaret M Brace; Gordon R Bernard; Dan R Masys
Journal:  Cell Tissue Bank       Date:  2007-10-25       Impact factor: 1.522

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  34 in total

Review 1.  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 2.  Incidental findings from clinical genome-wide sequencing: a review.

Authors:  Z Lohn; S Adam; P H Birch; J M Friedman
Journal:  J Genet Couns       Date:  2013-05-26       Impact factor: 2.537

3.  Timing and context: important considerations in the return of genetic results to research participants.

Authors:  Kate A McBride; Nina Hallowell; Martin H N Tattersall; Judy Kirk; Mandy L Ballinger; David M Thomas; Gillian Mitchell; Mary-Anne Young
Journal:  J Community Genet       Date:  2015-05-26

4.  Tailoring the process of informed consent in genetic and genomic research.

Authors:  Charles N Rotimi; Patricia A Marshall
Journal:  Genome Med       Date:  2010-03-24       Impact factor: 11.117

5.  Consent to epistemic interventions: a contribution to the debate on the right (not) to know.

Authors:  Niels Nijsingh
Journal:  Med Health Care Philos       Date:  2016-03

6.  Individual genetic and genomic research results and the tradition of informed consent: exploring US review board guidance.

Authors:  Christian Simon; Laura A Shinkunas; Debra Brandt; Janet K Williams
Journal:  J Med Ethics       Date:  2012-03-05       Impact factor: 2.903

7.  Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.

Authors:  Conrad V Fernandez; P Pearl O'Rourke; Laura M Beskow
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

8.  PG4KDS: a model for the clinical implementation of pre-emptive pharmacogenetics.

Authors:  James M Hoffman; Cyrine E Haidar; Mark R Wilkinson; Kristine R Crews; Donald K Baker; Nancy M Kornegay; Wenjian Yang; Ching-Hon Pui; Ulrike M Reiss; Aditya H Gaur; Scott C Howard; William E Evans; Ulrich Broeckel; Mary V Relling
Journal:  Am J Med Genet C Semin Med Genet       Date:  2014-03-11       Impact factor: 3.908

9.  What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.

Authors:  Gail E Henderson; Eric T Juengst; Nancy M P King; Kristine Kuczynski; Marsha Michie
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

Review 10.  Ethical implications of the use of whole genome methods in medical research.

Authors:  Jane Kaye; Paula Boddington; Jantina de Vries; Naomi Hawkins; Karen Melham
Journal:  Eur J Hum Genet       Date:  2009-11-04       Impact factor: 4.246

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