(Q34000877)

30 July 2017

title

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

1 reference

30 July 2017

author

Stephanie M Fullerton

9

Stephanie M Fullerton

0 references

Wylie Burke

28

Wylie Burke

1 reference

30 July 2017

1

Gail P Jarvik

0 references

Ellen Wright Clayton

5

Ellen W Clayton

0 references

Ingrid A Holm

Ingrid A Holm

13

0 references

Heidi L. Rehm

Heidi L Rehm

18

0 references

Richard R Sharp

19

Richard R Sharp

1 reference

30 July 2017

14

Iftikhar J Kullo

1 reference

30 July 2017

25

Wendy A Wolf

1 reference

30 July 2017

7

Barbara J Evans

1 reference

30 July 2017

11

Nanibaa' A Garrison

1 reference

30 July 2017

23

Marc S Williams

1 reference

30 July 2017

16

Cathy McCarty

1 reference

30 July 2017

2

Laura M Amendola

1 reference

30 July 2017

4

Kyle Brothers

1 reference

30 July 2017

12

Stacy W Gray

1 reference

30 July 2017

20

Joseph Salama

1 reference

30 July 2017

24

Susan M Wolf

1 reference

30 July 2017

Lisa Soleymani Lehmann

15

Lisa Soleymani Lehmann

1 reference

30 July 2017

3

Jonathan S Berg

1 reference

30 July 2017

Wendy Chung

6

1 reference

30 July 2017

James P Evans

8

1 reference

30 July 2017

Carlos J Gallego

10

1 reference

30 July 2017

Cynthia A Prows

17

1 reference

30 July 2017

Saskia Sanderson

21

1 reference

30 July 2017

Sara L Van Driest

22

1 reference

30 July 2017

eMERGE Act-ROR Committee and CERC Committee

26

1 reference

30 July 2017

CSER Act-ROR Working Group

27

1 reference

30 July 2017

language of work or name

English

0 references

publication date

8 May 2014

1 reference

American Journal of Human Genetics

30 July 2017

published in

1 reference

30 July 2017

volume

94

1 reference

30 July 2017

issue

6

1 reference

30 July 2017

page(s)

818-826

1 reference

The First Amendment Right to Speak About the Human Genome.

30 July 2017

cites work

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

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).

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Return of results: ethical and legal distinctions between research and clinical care

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Addressing the ethical challenges in genetic testing and sequencing of children

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Stakeholder views on returning research results

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Actionable, pathogenic incidental findings in 1,000 participants' exomes

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

ACMG recommendations on incidental findings are flawed scientifically and ethically

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Recommendations for returning genomic incidental findings? We need to talk!

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

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

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Point-counterpoint. Patient autonomy and incidental findings in clinical genomics

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Self-guided management of exome and whole-genome sequencing results: changing the results return model

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Technical report: Ethical and policy issues in genetic testing and screening of children

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Ethical and policy issues in genetic testing and screening of children

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

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

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Interest in genetic testing for modest changes in breast cancer risk: implications for SNP testing.

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

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

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Offering individual genetic research results: context matters

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Managing incidental findings in human subjects research: analysis and recommendations

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

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

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Issues of consent and feedback in a genetic epidemiological study of women with breast cancer

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Incidental findings in clinical genomics: a clarification

5 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

To test or not to test? The role of attitudes, knowledge, and religious involvement among U.S. adults on intent-to-obtain adult genetic testing

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

How does the collection of genetic test results affect research participants?

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Medicine. Reestablishing the researcher-patient compact.

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Paternalism and the ACMG recommendations on genomic incidental findings: patients seen but not heard

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors

29 October 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4121476

Genetic counseling for families with inherited susceptibility to breast and ovarian cancer

29 October 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/24814192

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1016/J.AJHG.2014.04.009

1 reference

30 July 2017

1 reference

30 July 2017

1 reference