Literature DB >> 23681280

Does a duty of disclosure foster special treatment of genetic research participants?

Robin Z Hayeems1, Fiona A Miller, Jessica P Bytautas, Li Li.   

Abstract

The principle that research participants not receive enhanced care compared to non-participants may be challenged by a duty to disclose genetic research results, especially where care is otherwise inaccessible. Autism researchers' attitudes toward providing enhanced care to study participants were analyzed quantitatively using descriptive and multivariate analyses of survey data and qualitatively through thematic analysis of interview data. Approximately half of survey respondents (n = 168, RR = 44 %) agreed they should provide additional knowledge (52 %) or services (48 %) to study participants that may not be available to non-participants. Qualitatively (n = 23), respondents were motivated by the notion of reciprocity but highlighted tensions when research enables access to expertise and therapeutic resources that are otherwise difficult to obtain. For researchers, feeling obliged to report research results may be in conflict with the obligation to avoid special treatment of research participants; this may in turn threaten principles of voluntariness, autonomy, and justice.

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Year:  2013        PMID: 23681280     DOI: 10.1007/s10897-013-9597-z

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  19 in total

1.  Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project.

Authors:  Béatrice Godard; Jennifer Marshall; Claude Laberge
Journal:  Community Genet       Date:  2007

2.  Distinguishing research from clinical care in cancer genetics: theoretical justifications and practical strategies.

Authors:  Nina Hallowell; Sarah Cooke; Gill Crawford; Anneke Lucassen; Michael Parker
Journal:  Soc Sci Med       Date:  2009-04-05       Impact factor: 4.634

3.  Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results.

Authors:  Robin Zoe Hayeems; Fiona Alice Miller; Li Li; Jessica Peace Bytautas
Journal:  Eur J Hum Genet       Date:  2011-03-16       Impact factor: 4.246

4.  One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants.

Authors:  Fiona Alice Miller; Robin Zoe Hayeems; Li Li; Jessica Peace Bytautas
Journal:  Eur J Hum Genet       Date:  2012-02-15       Impact factor: 4.246

5.  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

6.  What is a meaningful result? Disclosing the results of genomic research in autism to research participants.

Authors:  Fiona Alice Miller; Robin Zoe Hayeems; Jessica Peace Bytautas
Journal:  Eur J Hum Genet       Date:  2010-03-17       Impact factor: 4.246

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.  Duty to disclose what? Querying the putative obligation to return research results to participants.

Authors:  F A Miller; R Christensen; M Giacomini; J S Robert
Journal:  J Med Ethics       Date:  2008-03       Impact factor: 2.903

9.  The legal risks of returning results of genomics research.

Authors:  Ellen Wright Clayton; Amy L McGuire
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

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

Authors:  Fiona A Miller; Mita Giacomini; Catherine Ahern; Jason S Robert; Sonya de Laat
Journal:  BMC Med Ethics       Date:  2008-02-22       Impact factor: 2.652

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  1 in total

Review 1.  Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues.

Authors:  Sabina Gainotti; Deborah Mascalzoni; Virginie Bros-Facer; Carlo Petrini; Giovanna Floridia; Marco Roos; Marco Salvatore; Domenica Taruscio
Journal:  Int J Environ Res Public Health       Date:  2018-09-21       Impact factor: 3.390

  1 in total

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