Ethical Considerations Related to Return of Results from Genomic Medicine Projects: The eMERGE Network (Phase III) Experience. (Q50119980)

6 July 2018

title

Ethical Considerations Related to Return of Results from Genomic Medicine Projects: The eMERGE Network (Phase III) Experience. (English)

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6 July 2018

main subject

sensitive information

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4

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Ingrid A Holm

Ingrid Holm

22

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Janet E. Olson

5

Janet Olson

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Richard R Sharp

32

Richard R Sharp

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Julia Wynn

16

Julia Wynn

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Jordan W Smoller

31

Jordan W Smoller

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Iftikhar J Kullo

33

Iftikhar J Kullo

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author name string

Robyn Fossey

1

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David Kochan

2

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Erin Winkler

3

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Stephen Thibodeau

6

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John J Connolly

7

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Margaret Harr

8

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Meckenzie A Behr

9

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Cynthia A Prows

10

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Beth Cobb

11

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Melanie F Myers

12

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Nancy D Leslie

13

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Bahram Namjou-Khales

14

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Hila Milo Rasouly

15

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Alexander Fedotov

17

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Wendy K Chung

18

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Ali Gharavi

19

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Janet L Williams

20

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Lynn Pais

21

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Sharon Aufox

23

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Maureen E Smith

24

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Aaron Scrol

25

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Kathleen Leppig

26

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Gail P Jarvik

27

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Georgia L Wiesner

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Rongling Li

29

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Mary Stroud

30

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publication date

3 January 2018

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Journal of personalized medicine

published in

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volume

8

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6 July 2018

issue

1

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6 July 2018

Creative Commons Attribution 4.0 International

copyright license

start time

3 January 2018

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April 2022 Public Data File from Crossref

copyright status

copyrighted

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cites work

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1 reference

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10 July 2018

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Practical guidance on informed consent for pediatric participants in a biorepository

10 July 2018

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Informed consent for biobanking: consensus-based guidelines for adequate comprehension

10 July 2018

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Return of results in the genomic medicine projects of the eMERGE network

10 July 2018

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Informed consent: Issues and challenges.

10 July 2018

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ACMG recommendations on incidental findings are flawed scientifically and ethically

10 July 2018

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

10 July 2018

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The Electronic Medical Records and Genomics (eMERGE) Network: past, present, and future

10 July 2018

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

10 July 2018

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

10 July 2018

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Implementing genomic medicine in the clinic: the future is here

10 July 2018

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Leveraging the electronic health record to implement genomic medicine

10 July 2018

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

10 July 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

Is informed consent broken?

10 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

A systematic review of the empirical literature evaluating IRBs: what we know and what we still need to learn

10 July 2018

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The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies

10 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

Research participation and the right to withdraw

10 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

Variations among Institutional Review Board reviews in a multisite health services research study

10 July 2018

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A survey of IRB process in 68 U.S. hospitals

10 July 2018

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Problematic variation in local institutional review of a multicenter genetic epidemiology study

10 July 2018

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Readability standards for informed-consent forms as compared with actual readability

10 July 2018

1 reference

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Review of first 5 years of screening for familial hypercholesterolaemia in the Netherlands

10 July 2018

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Tracing of patients with familial hypercholesterolemia in the Netherlands

10 July 2018

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The ethics of contacting family members of a subject in a genetic research study to return results for an autosomal dominant syndrome.

10 July 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

Incidental findings in clinical genomics: a clarification

14 August 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

The right to withdraw from research

14 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

Long-term compliance with lipid-lowering medication after genetic screening for familial hypercholesterolemia

14 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5872076

Aligning policy to promote cascade genetic screening for prevention and early diagnosis of heritable diseases

14 August 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/29301385

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.3390/JPM8010002

1 reference

6 July 2018

PMC publication ID

5872076

1 reference

6 July 2018

PubMed publication ID

29301385

1 reference

6 July 2018