Literature DB >> 22402758

Taking aims seriously: repository research and limits on the duty to return individual research findings.

Pilar Ossorio1.   

Abstract

Most discussions of researchers' duties to return incidental findings or research results to research participants or repository contributors fail to provide an adequate theoretical grounding for such duties. Returning findings is a positive duty, a duty to help somebody. Typically, such duties are specified narrowly such that helping is only a duty when it poses little or no risk or burden to the helper and does not interfere with her legitimate aims. Under current budgetary and personnel constraints, and with currently available information technology, routine return of individual findings from research using repository materials would constitute a substantial burden on the scientific enterprise and would seriously frustrate the aims of both scientists and specimen/data contributors. In most cases, researchers' limited duties to help repository contributors probably can be fulfilled by some action less demanding than returning individual findings. Furthermore, the duty-to-return issue should be analyzed as a conflict between (possibly) helping some contributors now and (possibly) helping a greater number of people who would benefit in the future from the knowledge produced by research.

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Mesh:

Year:  2012        PMID: 22402758      PMCID: PMC3940279          DOI: 10.1038/gim.2012.5

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  17 in total

1.  Why are killing and letting die wrong?

Authors:  Matthew Hanser
Journal:  Philos Public Aff       Date:  1995

2.  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

3.  Considering the nature of individual research results.

Authors:  Laura M Beskow
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

4.  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

5.  Offering individual genetic research results: context matters.

Authors:  Laura M Beskow; Wylie Burke
Journal:  Sci Transl Med       Date:  2010-06-30       Impact factor: 17.956

6.  Federal policy for the protection of human subjects. Final rule.

Authors: 
Journal:  Fed Regist       Date:  1991-06-18

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

Authors:  Franklin G Miller; Michelle M Mello; Steven Joffe
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.  Bodies of Data: Genomic Data and Bioscience Data Sharing.

Authors:  Pilar N Ossorio
Journal:  Soc Res (New York)       Date:  2011

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

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  13 in total

Review 1.  Return of individual research results and incidental findings: facing the challenges of translational science.

Authors:  Susan M Wolf
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

2.  Returning genetic research results: study type matters.

Authors:  Amy L McGuire; Jill Oliver Robinson; Rachel B Ramoni; Debra S Morley; Steven Jofe; Sharon E Plon
Journal:  Per Med       Date:  2013-01       Impact factor: 2.512

3.  Communicating with biobank participants: preferences for receiving and providing updates to researchers.

Authors:  Jessica L Mester; MaryBeth Mercer; Aaron Goldenberg; Rebekah A Moore; Charis Eng; Richard R Sharp
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2015-01-18       Impact factor: 4.254

Review 4.  Evolving approaches to the ethical management of genomic data.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun
Journal:  Trends Genet       Date:  2013-02-28       Impact factor: 11.639

5.  Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study.

Authors:  Steven Joffe; Deborah E Sellers; Lynette Ekunwe; Donna Antoine-Lavigne; Sarah McGraw; Daniel Levy; Greta Lee Splansky
Journal:  Circ Genom Precis Med       Date:  2019-11-22

6.  Incidental variants are critical for genomics.

Authors:  Leslie G Biesecker
Journal:  Am J Hum Genet       Date:  2013-05-02       Impact factor: 11.025

7.  Return of research results from genomic biobanks: cost matters.

Authors:  Marianna J Bledsoe; Ellen Wright Clayton; Amy L McGuire; William E Grizzle; P Pearl O'Rourke; Nikolajs Zeps
Journal:  Genet Med       Date:  2012-08-30       Impact factor: 8.822

8.  Informed consent for next-generation nucleotide sequencing studies: Aiding communication between participants and investigators.

Authors:  Rhonda G Kost; Stephen M Poppel; Barry S Coller
Journal:  J Clin Transl Sci       Date:  2017-02-07

Review 9.  Ethical, legal, and social implications of incorporating genomic information into electronic health records.

Authors:  Ribhi Hazin; Kyle B Brothers; Bradley A Malin; Barbara A Koenig; Saskia C Sanderson; Mark A Rothstein; Marc S Williams; Ellen W Clayton; Iftikhar J Kullo
Journal:  Genet Med       Date:  2013-09-12       Impact factor: 8.822

10.  Experiences and attitudes of genome investigators regarding return of individual genetic test results.

Authors:  Rachel B Ramoni; Amy L McGuire; Jill Oliver Robinson; Debra S Morley; Sharon E Plon; Steven Joffe
Journal:  Genet Med       Date:  2013-05-02       Impact factor: 8.822

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