Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience (Q28742978)

4

Stephanie M Fullerton

0 references

Barbara A Koenig

5

Barbara A Koenig

0 references

Amy L McGuire

1

Amy L McGuire

0 references

Maureen E Smith

9

Maureen E Smith

0 references

Wendy A Wolf

12

Wendy A Wolf

0 references

Lynn G Dressler

3

Lynn G Dressler

0 references

Erin M Ramos

8

Erin Ramos

0 references

Carol J Waudby

11

Carol Waudby

0 references

Melissa A. Basford

2

Melissa Basford

0 references

Cathy McCarty

7

Cathy A McCarty

0 references

Carol P Somkin

10

Carol P Somkin

0 references

author name string

Rongling Li

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

6

0 references

language of work or name

English

0 references

publication date

July 2011

0 references

published in

Genome Research

0 references

volume

21

0 references

issue

7

0 references

page(s)

1001-7

0 references

cites work

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Never too old for anonymity: a statistical standard for demographic data sharing via the HIPAA Privacy Rule

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Genomic research and wide data sharing: views of prospective participants

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Evaluating re-identification risks with respect to the HIPAA privacy rule

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

The NCBI dbGaP database of genotypes and phenotypes

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Genetics. No longer de-identified

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Research ethics. Research practice and participant preferences: the growing gulf.

16 March 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

The paradoxical problem with multiple-IRB review

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Glad you asked: participants' opinions of re-consent for dbGap data submission

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Leveraging informatics for genetic studies: use of the electronic medical record to enable a genome-wide association study of peripheral arterial disease

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Public and biobank participant attitudes toward genetic research participation and data sharing

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Development of a large-scale de-identified DNA biobank to enable personalized medicine.

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Genetics. Genomic research and human subject privacy

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank

3 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Dementia and Alzheimer disease incidence: a prospective cohort study.

27 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3129243

Health-information altruists--a potentially critical resource

27 November 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/21632745

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Marshfield Clinic Personalized Medicine Research Project (PMRP): design, methods and recruitment for a large population-based biobank

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/21632745

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1101/GR.120329.111

1 reference

3663848

3663848

1 reference

1 reference

1 reference