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The risk of re-identification versus the need to identify individuals in rare disease research.
Hansson, Mats G; Lochmüller, Hanns; Riess, Olaf; Schaefer, Franz; Orth, Michael; Rubinstein, Yaffa; Molster, Caron; Dawkins, Hugh; Taruscio, Domenica; Posada, Manuel; Woods, Simon.
Afiliação
  • Hansson MG; Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
  • Lochmüller H; John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK.
  • Riess O; Institute of Medical Genetics and Applied Genomics, Rare Disease Center, University of Tübingen, Tübingen, Germany.
  • Schaefer F; Division of Pediatric Nephrology, Heidelberg University Center for Pediatric and Adolescent Medicine, Heidelberg, Germany.
  • Orth M; Department of Neurology, Ulm University Hospital, Ulm, Germany.
  • Rubinstein Y; Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, Bethesda, MD, USA.
  • Molster C; Office of Population Health Genomics, Public Health and Clinical Services Division, Department of Health Government of Western Australia, Perth, WA, Australia.
  • Dawkins H; Office of Population Health Genomics, Public Health and Clinical Services Division, Department of Health Government of Western Australia, Perth, WA, Australia.
  • Taruscio D; Centre for Comparative Genomics, Murdoch University, Murdoch, WA, Australia.
  • Posada M; Centre for Population Health Research, Curtin University of Technology, Bentley, WA, Australia.
  • Woods S; School of Pathology and Laboratory Medicine, University of Western Australia, Nedlands, WA, Australia.
Eur J Hum Genet ; 24(11): 1553-1558, 2016 11.
Article em En | MEDLINE | ID: mdl-27222291
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Testes Genéticos / Privacidade Genética / Doenças Raras / Cooperação Internacional Tipo de estudo: Diagnostic_studies / Etiology_studies / Prognostic_studies / Risk_factors_studies Limite: Humans Idioma: En Ano de publicação: 2016 Tipo de documento: Article
Texto completo
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Testes Genéticos / Privacidade Genética / Doenças Raras / Cooperação Internacional Tipo de estudo: Diagnostic_studies / Etiology_studies / Prognostic_studies / Risk_factors_studies Limite: Humans Idioma: En Ano de publicação: 2016 Tipo de documento: Article