Model consent froms for DNA linkage analysis and storage

Gold, Robin L.; Lebel, Robert Roger; Mearns, Edgar Alexander; Dworkin, R.; Hadro, Teresa A.; Burns, Joan K.

doi:10.1002/ajmg.1320470819

Cited by 4 publications

(5 citation statements)

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“…Suggestions for developing consent forms that address the issues of DNA banking and informed decision making have been presented (ASHG Ad Hoc Committee on DNA Technology, 1988;Knoppers and Laberge, 1989;Gold et al, 1993;ACMG Storage of Genetics Materials Committee, 1995;Weir and Horton, 1995b). Research facilities that bank DNA samples as a service to families in order to maintain a sample for future diagnostic purposes should clarify the differences between the banking and use of research versus clinical DNA samples.…”

Section: Dna Bankingmentioning

confidence: 99%

Patient and Family Participation in Genetic Research Studies

Wolpert

Crunk

Hahn

2005

Genetic Analysis of Complex Diseases

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Section: Dna Bankingmentioning

confidence: 99%

Patient and Family Participation in Genetic Research Studies

Wolpert

Crunk

Hahn

2005

Genetic Analysis of Complex Diseases

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“…Whether identified, coded or anonymous, stored biological collections raise various legal issues of ownership, access, informed consent, privacy and confidentiality [25, 49, 50]. Moreover, concern about secondary uses of biological samples for research purposes is mounting.…”

Section: Emerging Global Policy Issues:questions For Considerationmentioning

confidence: 99%

Banking Biological Collections: Data Warehousing, Data Mining, and Data Dilemmas in Genomics and Global Health Policy

Blatt

2000

Public Health Genomics

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While DNA databases may offer the opportunity to (1) assess population-based prevalence of specific genes and variants, (2) simplify the search for molecular markers, (3) improve targeted drug discovery and development for disease management, (4) refine strategies for disease prevention, and (5) provide the data necessary for evidence-based decision-making, serious scientific and social questions remain. Whether samples are identified, coded, or anonymous, biological banking raises profound ethical and legal issues pertaining to access, informed consent, privacy and confidentiality of genomic information, civil liberties, patenting, and proprietary rights. This paper provides an overview of key policy issues and questions pertaining to biological banking, with a focus on developments in specimen collection, transnational distribution, and public health and academic-industry research alliances. It highlights the challenges posed by the commercialization of genomics, and proposes the need for harmonization of biological banking policies.

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“…Prior to the NBAC document, several authors had already suggested such an approach [4, 6]. Although blanket consent for future projects may be desirable, donors should have the opportunity to specify, in the informed consent, any uses to which they do not want their samples put.…”

Section: Revising Informed Consentsmentioning

confidence: 99%

“…Starting with eighteenth-century British surgeon John Hunter, collections of stored specimens have existed in hospital pathology departments for at least two hundred years without arousing ethical or social concern [1]. In the last few years, however, with technologies of DNA extraction and the possibility of presymptomatic and susceptibility testing, the use of these collections in research has raised complex ethical issues and some heated discussions [2, 3, 4, 5, 6, 7, 8, 9, 10, 11]. The following is an introduction to these issues, based on practice and policy in the United States.…”

Section: Introductionmentioning

confidence: 99%