Literature DB >> 29903854

Development of a consensus approach for return of pathology incidental findings in the Genotype-Tissue Expression (GTEx) project.

Nicole C Lockhart1, Carol J Weil2, Latarsha J Carithers3, Susan E Koester4, A Roger Little5, Simona Volpi6, Helen M Moore2, Benjamin E Berkman7.   

Abstract

The active debate about the return of incidental or secondary findings in research has primarily focused on return to research participants, or in some cases, family members. Particular attention has been paid to return of genomic findings. Yet, research may generate other types of findings that warrant consideration for return, including findings related to the pathology of donated biospecimens. In the case of deceased biospecimen donors who are also organ and/or tissue transplant donors, pathology incidental findings may be relevant not to family members, but to potential organ or tissue transplant recipients. This paper will describe the ethical implications of pathology incidental findings in the Genotype-Tissue Expression (GTEx) project, the process for developing a consensus approach as to if/when such findings should be returned, possible implications for other research projects collecting postmortem tissues and how the scenario encountered in GTEx fits into the larger return of results/incidental findings debate. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Entities:  

Keywords:  clinical ethics; donation/procurement of organs/tissues; human tissue; pathology; research ethics

Mesh:

Year:  2018        PMID: 29903854      PMCID: PMC6740237          DOI: 10.1136/medethics-2017-104691

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  17 in total

1.  Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Authors:  Susan M Wolf; Rebecca Branum; Barbara A Koenig; Gloria M Petersen; Susan A Berry; Laura M Beskow; Mary B Daly; Conrad V Fernandez; Robert C Green; Bonnie S LeRoy; Noralane M Lindor; P Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A Rothstein; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Genomic inheritances: disclosing individual research results from whole-exome sequencing to deceased participants' relatives.

Authors:  Ben Chan; Flavia M Facio; Haley Eidem; Sara Chandros Hull; Leslie G Biesecker; Benjamin E Berkman
Journal:  Am J Bioeth       Date:  2012       Impact factor: 11.229

3.  Donor-transmitted malignancies in organ transplantation: assessment of clinical risk.

Authors:  M A Nalesnik; E S Woodle; J M Dimaio; B Vasudev; L W Teperman; S Covington; S Taranto; J P Gockerman; R Shapiro; V Sharma; L J Swinnen; A Yoshida; M G Ison
Journal:  Am J Transplant       Date:  2011-06       Impact factor: 8.086

4.  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

5.  Intersection of biobanking and clinical care: should discrepant diagnoses and pathological findings be returned to research participants?

Authors:  Nicole C Lockhart; Rihab Yassin; Carol J Weil; Carolyn C Compton
Journal:  Genet Med       Date:  2012-02-16       Impact factor: 8.822

6.  Acting on incidental findings in research imaging.

Authors:  J M Wardlaw; H Davies; T C Booth; G Laurie; A Compston; C Freeman; M O Leach; A D Waldman; D J Lomas; K Kessler; F Crabbe; A Jackson
Journal:  BMJ       Date:  2015-11-10

7.  An implementation framework for the feedback of individual research results and incidental findings in research.

Authors:  Adrian Thorogood; Yann Joly; Bartha Maria Knoppers; Tommy Nilsson; Peter Metrakos; Anthoula Lazaris; Ayat Salman
Journal:  BMC Med Ethics       Date:  2014-12-23       Impact factor: 2.652

8.  Convergent loss of PTEN leads to clinical resistance to a PI(3)Kα inhibitor.

Authors:  Dejan Juric; Pau Castel; Malachi Griffith; Obi L Griffith; Helen H Won; Haley Ellis; Saya H Ebbesen; Benjamin J Ainscough; Avinash Ramu; Gopa Iyer; Ronak H Shah; Tiffany Huynh; Mari Mino-Kenudson; Dennis Sgroi; Steven Isakoff; Ashraf Thabet; Leila Elamine; David B Solit; Scott W Lowe; Cornelia Quadt; Malte Peters; Adnan Derti; Robert Schegel; Alan Huang; Elaine R Mardis; Michael F Berger; José Baselga; Maurizio Scaltriti
Journal:  Nature       Date:  2014-11-17       Impact factor: 49.962

9.  Ethical framework for the detection, management and communication of incidental findings in imaging studies, building on an interview study of researchers' practices and perspectives.

Authors:  Eline M Bunnik; Lisa van Bodegom; Wim Pinxten; Inez D de Beaufort; Meike W Vernooij
Journal:  BMC Med Ethics       Date:  2017-02-06       Impact factor: 2.652

10.  Outcomes of Organ Transplantation from Donors with a Cancer History.

Authors:  Shanzhou Huang; Yunhua Tang; Zebin Zhu; Jie Yang; Zhiheng Zhang; Linhe Wang; Chengjun Sun; Yixi Zhang; Qiang Zhao; Maogen Chen; Linwei Wu; Dongping Wang; Weiqiang Ju; Zhiyong Guo; Xiaoshun He
Journal:  Med Sci Monit       Date:  2018-02-18
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  1 in total

Review 1.  Functional genomics data: privacy risk assessment and technological mitigation.

Authors:  Gamze Gürsoy; Tianxiao Li; Susanna Liu; Eric Ni; Charlotte M Brannon; Mark B Gerstein
Journal:  Nat Rev Genet       Date:  2021-11-10       Impact factor: 53.242

  1 in total

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