Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. (Q55244429)

28 June 2018

title

Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. (English)

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28 June 2018

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3

Lainie Friedman Ross

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28 June 2018

author name string

Amy A Lemke

series ordinal

1

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28 June 2018

Colin Halverson

series ordinal

2

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28 June 2018

language of work or name

English

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publication date

21 March 2012

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28 June 2018

American Journal of Medical Genetics

published in

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28 June 2018

volume

158A

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28 June 2018

page(s)

1029-1037

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28 June 2018

issue

5

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28 June 2018

Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?

cites work

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

The ethics of 'public understanding of ethics'--why and how bioethics expertise should include public and patients' voices

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Children, biobanks and the scope of parental consent

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

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

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

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

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

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

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC).

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Regional differences in awareness and attitudes regarding genetic testing for disease risk and ancestry

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Genomic research and wide data sharing: views of prospective participants

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

The Organization of European Cancer Institute Pathobiology Working Group and its support of European biobanking infrastructures for translational cancer research

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

The role of race and trust in tissue/blood donation for genetic research

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Assessing the public's views in research ethics controversies: deliberative democracy and bioethics as natural allies

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Disclosure of research results to research participants: A pilot study of the needs and attitudes of adolescents and parents.

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Stewardship of human biospecimens, DNA, genotype, and clinical data in the GWAS era.

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Community-based dialogue: engaging communities of color in the United states' genetics policy conversation

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Public expectations for return of results from large-cohort genetic research

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Ethical, legal, and social implications of biobanks for genetics research

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Duty to disclose what? Querying the putative obligation to return research results to participants

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

The uneasy ethical and legal underpinnings of large-scale genomic biobanks

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Considering the nature of individual research results

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Letting the gene out of the bottle: a comment on returning individual research results to participants

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Disclosing individual genetic results to research participants

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Returning genetic research results to individuals: points-to-consider

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Three approaches to qualitative content analysis

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

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

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Patterns of consent in epidemiologic research: evidence from over 25,000 responders

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Offering to return results to research participants: attitudes and needs of principal investigators in the Children's Oncology Group

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

The therapeutic misconception: problems and solutions

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Review of community-based research: assessing partnership approaches to improve public health

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Research ethics. Children and population biobanks.

30 June 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Engaging the public on biobanks: outcomes of the BC biobank deliberation.

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Assessing the understanding of biobank participants.

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

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

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Research on stored biological samples: views of African American and White American cancer patients.

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Navigating an ethical patchwork--human gene banks.

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Enrollment of African Americans onto clinical treatment trials: study design barriers

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Nonresponse in a community cohort study: predictors and consequences for exposure-disease associations.

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

African Americans' views on research and the Tuskegee Syphilis Study.

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Summarizing historical information on controls in clinical trials

13 August 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Ethical issues in the communication of results

29 September 2018

1 reference

Crossref

https://api.crossref.org/works/10.1002%2FAJMG.A.34414

Evaluating the therapeutic misconception

21 January 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Implications of Disclosing Individual Results of Clinical Research

2 November 2018

1 reference

Crossref

https://api.crossref.org/works/10.1002%2FAJMG.A.34414

The emergence of an ethical duty to disclose genetic research results: international perspectives

21 January 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

Ethical issues in the communication of results

30 November 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=3331902

In the public interest: assessing expert and stakeholder influence in public deliberation about biobanks

30 November 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/22438108

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Factors associated with African Americans' enrollment in a national cancer genetics registry

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/22438108

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1002/AJMG.A.34414

1 reference

28 June 2018

PMCID

3331902

1 reference

28 June 2018

PubMed ID

22438108

1 reference

28 June 2018