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

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

http://www.wikidata.org/entity/Q33678672

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Evolving approaches to the ethical management of genomic data Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature Stakeholder engagement: a key component of integrating genomic information into electronic health records Identifiability in biobanks: models, measures, and mitigation strategies The MICHR Genomic DNA BioLibrary: An Empirical Study of the Ethics of Biorepository Development Scientists' perspectives on consent in the context of biobanking research.Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions The alliance between genetic biobanks and patient organisations: the experience of the telethon network of genetic biobanks Samples and data accessibility in research biobanks: an explorative survey Trust, Respect, and Reciprocity: Informing Culturally Appropriate Data-Sharing Practice in Vietnam Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region Research participants' attitudes towards the confidentiality of genomic sequence information Open access data sharing in genomic research Newspaper coverage of biobanks Genetic research participation in a young adult community sample Revisiting respect for persons in genomic research Biobanking: The Melding of Research with Clinical Care Offering aggregate results to participants in genomic research: opportunities and challenges Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives Genomic research and wide data sharing: views of prospective participants Public perspectives regarding data-sharing practices in genomics research The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience Open sharing of genomic data: Who does it and why?Evidence for chromosome 2p16.3 polycystic ovary syndrome susceptibility locus in affected women of European ancestry Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US Publics and biobanks: Pan-European diversity and the challenge of responsible innovation Active choice but not too active: public perspectives on biobank consent models.Genomic data in the electronic medical record: perspectives from a biobank community advisory board.A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts.Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?Community engagement in US biobanking: multiplicity of meaning and method.De-identified genomic data sharing: the research participant perspective.Bio-collections in autism research.From protection of privacy to control of data streams: a focus group study on biobanks in the information society.Molecular genetic testing and the future of clinical genomics.Research ethics. Research practice and participant preferences: the growing gulf.

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P2860

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

http://www.wikidata.org/entity/Q33678672

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2010 nî lūn-bûn

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2010 թուականի Յունուարին հրատարակուած գիտական յօդուած

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2010年の論文

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2010年論文

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2010年論文

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Public Health Genomics

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A A Lemke

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J Hebert-Beirne

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M E Smith

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W A Wolf

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P2860

Research ethics recommendations for whole-genome research: consensus statement

Share and share alike: deciding how to distribute the scientific and social benefits of genomic data

Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls

DNA data sharing: research participants' perspectives

The NCBI dbGaP database of genotypes and phenotypes

Attitudes and beliefs of African Americans toward participation in medical research.

Strategies for consulting with the community: the cases of four large-scale genetic databases.

Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research.

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

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

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