Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research. (Q40533108)

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24 February 2020

title

Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research (English)

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24 February 2020

1

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24 February 2020

Kurt D Christensen

6

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24 February 2020

7

Elissa R Weitzman

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24 February 2020

author name string

Brittany R Iles

2

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24 February 2020

Sonja I Ziniel

3

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24 February 2020

Phoebe L Bacon

4

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24 February 2020

Sarah K Savage

5

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24 February 2020

Noelle L Huntington

9

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24 February 2020

Robert C Green

8

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24 February 2020

publication date

1 October 2015

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Journal of Empirical Research on Human Research Ethics

24 February 2020

published in

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24 February 2020

volume

10

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24 February 2020

issue

4

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24 February 2020

page(s)

414-426

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The development of a preference-setting model for the return of individual genomic research results

24 February 2020

cites work

1 reference

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21 January 2018

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Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group

21 January 2018

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21 January 2018

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

21 January 2018

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Evaluation of the Validity and Utility of Genetic Testing for Rare Diseases

21 January 2018

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Personal utility and genomic information: look before you leap

21 January 2018

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The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository

21 January 2018

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Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support

21 January 2018

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Subjects matter: a survey of public opinions about a large genetic cohort study

21 January 2018

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Public opinion about the importance of privacy in biobank research

21 January 2018

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The Scientific Foundation for personal genomics: recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop

21 January 2018

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Medicine. Reestablishing the researcher-patient compact.

21 January 2018

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Multidimensional results reporting to participants in genomic studies: getting it right.

21 January 2018

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https://api.crossref.org/works/10.1177%2F1556264615599620

Public perspectives on returning genetics and genomics research results

21 January 2018

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Disclosing individual genetic results to research participants

21 January 2018

1 reference

https://api.crossref.org/works/10.1177%2F1556264615599620

Tiered disclosure options promote the autonomy and well-being of research subjects.

21 January 2018

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Communicating the results of clinical research to participants: attitudes, practices, and future directions

21 January 2018

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The past, present, and future of the debate over return of research results and incidental findings

21 January 2018

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Managing incidental findings and research results in genomic research involving biobanks and archived data sets

21 January 2018

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Parents' preferences for return of results in pediatric genomic research

21 January 2018

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Modelling decisions to undergo genetic testing for susceptibility to common health conditions: an ancillary study of the Multiplex Initiative

21 January 2018

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12 December 2020

The Informed Cohort Oversight Board: From Values to Architecture

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12 December 2020

Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children's Hospital Gene Partnership Informed Cohort Oversight Board

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12 December 2020

The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine

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12 December 2020

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

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12 December 2020

Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).

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12 December 2020

Identifiers

DOI

10.1177/1556264615599620

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https://www.ebi.ac.uk/europepmc/webservices/rest/search?query=EXT_ID:26376753%20AND%20SRC:MED&resulttype=core&format=json

24 February 2020

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24 February 2020

PubMed publication ID

26376753

1 reference