Return of individual research results from genomic research: A systematic review of stakeholder perspectives

DF Vears, JT Minion, SJ Roberts, J Cummings… - PloS one, 2021 - journals.plos.org
Despite the plethora of empirical studies conducted to date, debate continues about whether
and to what extent results should be returned to participants of genomic research. We aimed …

[HTML][HTML] Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies

MP Mackley, B Fletcher, M Parker, H Watkins… - Genetics in …, 2017 - Elsevier
Purpose As whole-exome sequencing (WES) and whole-genome sequencing (WGS) move
into routine clinical practice, it is timely to review data that might inform the debate regarding …

ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing

RC Green, JS Berg, WW Grody, SS Kalia, BR Korf… - Genetics in …, 2013 - nature.com
In clinical exome and genome sequencing, there is a potential for the recognition and
reporting of incidental or secondary findings unrelated to the indication for ordering the …

Attitudes of parents toward the return of targeted and incidental genomic research findings in children

CV Fernandez, E Bouffet, D Malkin, N Jabado… - Genetics in …, 2014 - nature.com
Purpose: We describe parental attitudes toward the return of targeted and incidental
genomic research results in the setting of high-risk pediatric cancer and inherited childhood …

Secondary findings from whole-exome/genome sequencing evaluating stakeholder perspectives. A review of the literature

J Delanne, S Nambot, A Chassagne, O Putois… - European Journal of …, 2019 - Elsevier
With the development of next generation sequencing, beyond identifying the cause of
manifestations that justified prescription of the test, other information with potential interest …

'Information is information': a public perspective on incidental findings in clinical and research genome‐based testing

S Daack‐Hirsch, M Driessnack, A Hanish… - Clinical …, 2013 - Wiley Online Library
The potential for genomic incidental findings is increasing with the use of genome‐based
testing. At the same time approaches to clinical decision making are shifting to shared …

A framework for analyzing the ethics of disclosing genetic research findings

L Eckstein, JR Garrett, BE Berkman - Journal of Law, Medicine & …, 2014 - cambridge.org
Over the past decade, there has been an extensive debate about whether researchers have
an obligation to disclose genetic research findings, including primary and secondary …

Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature

A Husedzinovic, D Ose, C Schickhardt… - European Journal of …, 2015 - nature.com
The success of biobank-based genomic research is widely dependent on people's
willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the …

Management of incidental findings in the era of next-generation sequencing

H L. Blackburn, B Schroeder, C Turner… - Current …, 2015 - benthamdirect.com
Next-generation sequencing (NGS) technologies allow for the generation of whole exome or
whole genome sequencing data, which can be used to identify novel genetic alterations …

The unintended implications of blurring the line between research and clinical care in a genomic age

BE Berkman, SC Hull, L Eckstein - Personalized Medicine, 2014 - Taylor & Francis
While the development of next-generation sequencing technology has had a paradigm-
changing impact on biomedical research, there is likely to be a gap between discovery of …