Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US (Q30490882)

15 October 2017

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US (English)

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15 October 2017

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United States of America

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20

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15 October 2017

Stephanie M Fullerton

12

Stephanie M Fullerton

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Gail P. Jarvik

15

Gail P Jarvik

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Ingrid A Holm

Ingrid A Holm

29

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Martha J. Shrubsole

26

Martha J Shrubsole

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15 October 2017

Jonathan S. Schildcrout

27

Jonathan S Schildcrout

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15 October 2017

19

Evette J Ludman

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15 October 2017

28

Maureen E Smith

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15 October 2017

7

Murray H Brilliant

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15 October 2017

21

Jennifer B McCormick

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15 October 2017

23

Melanie F Myers

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15 October 2017

6

Sharon A Aufox

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15 October 2017

3

Nathaniel D Mercaldo

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15 October 2017

25

Janet L Williams

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15 October 2017

13

Nanibaa' A Garrison

1 reference

15 October 2017

2

Kyle B Brothers

1 reference

15 October 2017

14

Carol R Horowitz

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Armand H Matheny Antommaria

15 October 2017

5

Armand H Matheny Antommaria

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15 October 2017

22

Valerie D McManus

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15 October 2017

Saskia C Sanderson

1

1 reference

15 October 2017

Diego Campos

8

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15 October 2017

David S Carrell

9

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15 October 2017

John Connolly

10

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15 October 2017

Pat Conway

11

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15 October 2017

David Kaufman

16

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15 October 2017

Terrie E Kitchner

17

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15 October 2017

Rongling Li

18

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15 October 2017

Aaron Scrol

24

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15 October 2017

language of work or name

English

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publication date

4 February 2017

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American Journal of Human Genetics

15 October 2017

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15 October 2017

100

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15 October 2017

3

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15 October 2017

414-427

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Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions

15 October 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

The precision medicine initiative: a new national effort

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

A new initiative on precision medicine

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Stakeholder engagement: a key component of integrating genomic information into electronic health records

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Factors influencing public risk-benefit considerations of nanotechnology: Assessing the effects of mass media, interpersonal communication, and elaborative processing

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

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

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Public preferences regarding informed consent models for participation in population-based genomic research

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

A method of moments estimator for random effect multivariate meta-analysis

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

The tension between data sharing and the protection of privacy in genomics research

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

20 June 2018

Genomics for the world

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

The PhenX Toolkit: get the most from your measures

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Active choice but not too active: public perspectives on biobank consent models.

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

The 2010 Eurobarometer on the life sciences

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

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

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

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

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

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

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Genome-wide association studies in diverse populations

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Public opinion about the importance of privacy in biobank research

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Next generation disparities in human genomics: concerns and remedies

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Cancer patients' attitudes toward future research uses of stored human biological materials

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

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

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Development of a revised Health Care System Distrust scale

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

DNA data sharing: research participants' perspectives

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

New models of collaboration in genome-wide association studies: the Genetic Association Information Network

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Research with stored biological samples: what do research participants want?

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Consent for genetic research in a general population: the NHANES experience

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies.

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Two large-scale surveys on community attitudes toward an opt-out biobank.

20 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Public perspectives on informed consent for biobanking

26 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Veterans' attitudes regarding a database for genomic research

26 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Religious beliefs and public attitudes toward nanotechnology in Europe and the United States

26 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Joint replacement recipients' post-surgery views about health information privacy and registry participation.

26 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Measuring trust in medical researchers

26 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study.

26 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=5339111

Merging and emerging cohorts: necessary but not sufficient

26 November 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/28190457

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1016/J.AJHG.2017.01.021

1 reference

release_stjobqxzird5xa7zkcwmbnfdla

15 October 2017

1 reference

Fatcat

https://api.fatcat.wiki/v0/release/stjobqxzird5xa7zkcwmbnfdla

mapped directly with Wikidata item

24 November 2022

based on heuristic

1 reference

15 October 2017

PubMed publication ID

28190457

1 reference