(Q38068936)

28 August 2017

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title

Why do participants enroll in population biobank studies? A systematic literature review (English)

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28 August 2017

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5

Pascal Borry

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author name string

Hélène Nobile

1

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28 August 2017

Eric Vermeulen

2

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28 August 2017

Kristof Thys

3

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28 August 2017

Manuela M Bergmann

4

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28 August 2017

publication date

1 January 2013

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Expert Review of Molecular Diagnostics: new diagnostic technologies are set to revolutionise healthcare

28 August 2017

published in

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28 August 2017

volume

13

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28 August 2017

issue

1

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28 August 2017

page(s)

35-47

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A European survey on biobanks: trends and issues

28 August 2017

cites work

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

The social and ethical issues of post-genomic human biobanks

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

A proposal for a model of informed consent for the collection, storage and use of biological materials for research purposes

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Should donors be allowed to give broad consent to future biobank research?

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

An investigation of patients' motivations for their participation in genetics-related research

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Great expectations: views of genetic research participants regarding current and future genetic studies

21 January 2018

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https://api.crossref.org/works/10.1586%2FERM.12.116

The meaning of genetic research results: reflections from individuals with and without a known genetic disorder

21 January 2018

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https://api.crossref.org/works/10.1586%2FERM.12.116

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

21 January 2018

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https://api.crossref.org/works/10.1586%2FERM.12.116

"If I could in a small way help": motivations for and beliefs about sample donation for genetic research

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Genomic research and wide data sharing: views of prospective participants

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Incidental findings of therapeutic misconception in biobank-based research

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

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

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Hypothetical and factual willingness to participate in biobank research

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

A systematic review of the effect of retention methods in population-based cohort studies.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Beyond “misunderstanding”: Written information and decisions about taking part in a genetic epidemiology study

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Reconsidering the value of consent in biobank research.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

"We only did it because he asked us": gendered accounts of participation in a population genetic data collection

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Assessing the understanding of biobank participants.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Healthy women's motivators and barriers to participation in a breast cancer cohort study: a qualitative study

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Informed consent and subject motivation to participate in a large, population-based genomics study: the Marshfield Clinic Personalized Medicine Research Project

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Attitudes toward participation in a pregnancy and child cohort study

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Research participation and internal normativity: understanding why people participate

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

'Science is really needed--that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Gift relationships in genetics research

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Beyond informed consent: the therapeutic misconception and trust.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

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

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

The future of incidental findings: should they be viewed as benefits?

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Managing incidental findings in human subjects research: analysis and recommendations

21 January 2018

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https://api.crossref.org/works/10.1586%2FERM.12.116

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

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Informing study participants of research results: an ethical imperative.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Disclosing individual genetic results to research participants

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Subjects matter: a survey of public opinions about a large genetic cohort study.

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

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

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

The ethics of research biobanking: a critical review of the literature

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

How do women feel about their cervical cytology samples being used for research?

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

‘I'm not Really Read up on Genetics’: Biobanks and the Social Context of Informed Consent

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

Clinical Ethics versus Clinical Research

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

A Closer Look: Are We Subjects or Are We Donors?

21 January 2018

1 reference

https://api.crossref.org/works/10.1586%2FERM.12.116

21 January 2018

Identifiers

DOI

10.1586/ERM.12.116

1 reference

28 August 2017

1 reference