Literature DB >> 30260295

Reconceptualizing harms and benefits in the genomic age.

Anya E R Prince1, Benjamin E Berkman2.   

Abstract

As new, high-powered sequencing technologies are increasingly incorporated into genomics research, we believe that there has been a break point in how risks and benefits associated with genetic information are being characterized and understood. Genomic sequencing provides the potential benefit of a wealth of information, but also has the potential to alter how we conceptualize risks of sequencing. Until now, our conceptions of risks and benefits have been generally static, arising out of the early ethical, legal and social implications studies conducted in the context of targeted genetics. This paper investigates how the increasing availability of genetic information is changing views about risks and benefits, particularly examining our evolving understanding of psychosocial harms and our expanding conception of benefit. We argue that the lack of robust empirical evidence of psychosocial harms and the expanding view that benefits of genomic research include indirect familial benefit necessitate continued ethical, legal and social implications research.

Entities:  

Keywords:  ELSI; genomics research; next-generation sequencing; research ethics; risks and benefits

Mesh:

Year:  2018        PMID: 30260295      PMCID: PMC6295320          DOI: 10.2217/pme-2018-0022

Source DB:  PubMed          Journal:  Per Med        ISSN: 1741-0541            Impact factor:   2.512


  50 in total

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6.  Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

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7.  Return of secondary genomic findings vs patient autonomy: implications for medical care.

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Review 8.  The psychological impact of genetic information on children: a systematic review.

Authors:  Claire E Wakefield; Lucy V Hanlon; Katherine M Tucker; Andrea F Patenaude; Christina Signorelli; Jordana K McLoone; Richard J Cohn
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9.  ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing.

Authors: 
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Review 10.  Personal genome testing: test characteristics to clarify the discourse on ethical, legal and societal issues.

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Review 3.  "Choice of law" in precision medicine research.

Authors:  Laura M Beskow; Leslie E Wolf
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4.  An ethical framework for genetic counseling in the genomic era.

Authors:  Leila Jamal; Will Schupmann; Benjamin E Berkman
Journal:  J Genet Couns       Date:  2019-12-19       Impact factor: 2.717

5.  Balancing External Validity and Concern for Psychosocial Harms in Translational Genetic Research.

Authors:  Jessica Mozersky; Michelle N Meyer; Alanna Kulchak Rahm; Sean M O'Dell; Adam Buchanan
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6.  Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.

Authors:  Will Schupmann; Skye A Miner; Haley K Sullivan; Jamie R Glover; Janet E Hall; Shepherd H Schurman; Benjamin E Berkman
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  6 in total

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