Research ethics. Research practice and participant preferences: the growing gulf. - Test2 - elhamkhani - TriplyDB

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

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

http://www.wikidata.org/entity/Q34603471

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Evolving approaches to the ethical management of genomic data The tension between data sharing and the protection of privacy in genomics research Return of individual research results and incidental findings: facing the challenges of translational science Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking Launching PCORnet, a national patient-centered clinical research network Participant-Centric Initiatives: Tools to Facilitate Engagement In Research Ethical and legal implications of whole genome and whole exome sequencing in African populations.Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?Offering aggregate results to participants in genomic research: opportunities and challenges dbGaP data access requests: a call for greater transparency Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US NCI think tank concerning the identifiability of biospecimens and "omic" data.Are all "research fields" equal? Rethinking practice for the use of data from crowdsourcing market places.Returning findings within longitudinal cohort studies: the 1958 birth cohort as an exemplar.Re-contacting participants for inclusion in the database of Genotypes and Phenotypes (dbGaP): Findings from three case-control studies of lung cancer.Stewardship practices of U.S. biobanks Neglected ethical issues in biobank management: Results from a U.S. study Research ethics. Paying patients for their tissue: the legacy of Henrietta Lacks Attitudes of African-American parents about biobank participation and return of results for themselves and their children Newborn screening education on the internet: a content analysis of North American newborn screening program websites.Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.Are enrollment sites the key to optimizing participation in genetic studies?Latino beliefs about biomedical research participation: a qualitative study on the U.S.-Mexico border.Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.A survey of patient perspectives on the research use of health information and biospecimens Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.Genetics researchers' and IRB professionals' attitudes toward genetic research review: a comparative analysis.Reporting actionable research results: shared secrets can save lives.Perspectives of Decisional Surrogates and Patients Regarding Critical Illness Genetic Research Differences in preferences for models of consent for biobanks between Black and White women.The post-analytical phase of histopathology practice: Storage, retention and use of human tissue specimens.Participant views on consent in cancer genetics research: preparing for the precision medicine era.Informed consent in the era of biobanks Parental Views on Expanded Newborn Screening Using Whole-Genome Sequencing.Consent Issues in Genetic Research: Views of Research Participants

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P2860

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

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2011 nî lūn-bûn

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2011年の論文

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

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

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E B Larson

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E J Ludman

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G P Jarvik

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S M Fullerton

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P2860

Genomic research and wide data sharing: views of prospective participants

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

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

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

Meeting the governance challenges of next-generation biorepository research.

Hypothetical and factual willingness to participate in biobank research

Is deidentification sufficient to protect health privacy in research?

Informed consent in biobank research: a deliberative approach to the debate.

Transforming the culture of biomedical research from compliance to trustworthiness: insights from nonmedical sectors.

Transplant tourism in China: a tale of two transplants.

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331

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Susan B. Trinidad

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2011-01-01T00:00:00Z

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49771938

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research ethics

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