Literature DB >> 18841252

GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE.

Susan M C Gibbons1, Jane Kaye.   

Abstract

This paper provides an introduction to a collection of five papers, published as a special symposium journal issue, under the title: "Governing Genetic Databases: Collection, Storage and Use". It begins by setting the scene, to provide a backdrop and context for the papers. It describes the evolving scientific landscape around genetic databases and genomic research, particularly within the biomedical and criminal forensic investigation fields. It notes the lack of any clear, coherent or coordinated legal governance regime, either at the national or international level. It then identifies and reflects on key cross-cutting issues and themes that emerge from the five papers, in particular: terminology and definitions; consent; special concerns around population genetic databases (biobanks) and forensic databases; international harmonisation; data protection; data access; boundary-setting; governance; and issues around balancing individual interests against public good values.

Entities:  

Year:  2007        PMID: 18841252      PMCID: PMC2493389     

Source DB:  PubMed          Journal:  Kings Law J        ISSN: 0961-5768


  3 in total

1.  Health research in the UK: the price of success.

Authors:  Richard Horton
Journal:  Lancet       Date:  2006-07-08       Impact factor: 79.321

Review 2.  Cyberbanks and other virtual research repositories.

Authors:  Mary Anderlik Majumder
Journal:  J Law Med Ethics       Date:  2005       Impact factor: 1.718

Review 3.  Molecular epidemiology: recent advances and future directions.

Authors:  F P Perera; I B Weinstein
Journal:  Carcinogenesis       Date:  2000-03       Impact factor: 4.944

  3 in total
  6 in total

1.  Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?

Authors:  Mohammad Firdaus Abdul Aziz; Aimi Nadia Mohd Yusof
Journal:  Asian Bioeth Rev       Date:  2019-05-25

2.  Comparison of participant information and informed consent forms of five European studies in genetic isolated populations.

Authors:  Deborah Mascalzoni; A Cecile J W Janssens; Alison Stewart; Peter Pramstaller; Ulf Gyllensten; Igor Rudan; Cornelia M van Duijn; James F Wilson; Harry Campbell; Ruth M C Quillan
Journal:  Eur J Hum Genet       Date:  2009-10-14       Impact factor: 4.246

Review 3.  Ethical aspects of human biobanks: a systematic review.

Authors:  Danijela Budimir; Ozren Polasek; Ana Marusić; Ivana Kolcić; Tatijana Zemunik; Vesna Boraska; Ana Jeroncić; Mladen Boban; Harry Campbell; Igor Rudan
Journal:  Croat Med J       Date:  2011-06       Impact factor: 1.351

4.  Ethical issues in the export, storage and reuse of human biological samples in biomedical research: perspectives of key stakeholders in Ghana and Kenya.

Authors:  Paulina Tindana; Catherine S Molyneux; Susan Bull; Michael Parker
Journal:  BMC Med Ethics       Date:  2014-10-18       Impact factor: 2.652

5.  Editorial - ethical practice and genomic research.

Authors:  Janet Seeley; Michael Parker
Journal:  Glob Bioeth       Date:  2020-12-09

6.  Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study.

Authors:  Linus Johnsson; Mats G Hansson; Stefan Eriksson; Gert Helgesson
Journal:  BMJ       Date:  2008-07-10
  6 in total

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