World Medical Association opposes Icelandic gene database

Duncan, Nigel

doi:10.1136/bmj.318.7191.1096a

Cited by 11 publications

(2 citation statements)

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“…41,42 This is the process which was undertaken in Iceland when Decode Genetics 43 proposed to create an electronic database of the country's health records that could be linked to individuals genotype. 44,45 Part of the purpose of our study was to provide an example of the process of assessing the attitudes of a community before pursuing population-based genetic research. By engaging the community and assessing their concerns about the potentially negative consequences of genetic testing and research we hope to have provided a foundation for future research within the Ashkenazi Jewish population.…”

Section: Tablementioning

confidence: 99%

A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing

Lehmann

Weeks²,

Klar³

et al. 2002

Genetics in Medicine

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Purpose: The Human Genome Project continues to produce an increasing number of genetic susceptibility tests.Some of these genetic tests target social or ethnic groups who are at increased risk of developing a disease. The Ashkenazi Jewish community is one ethnic group that is an ongoing subject of genetic investigation. We assessed the attitudes of a population-based sample of Ashkenazi Jewish women toward breast-ovarian cancer susceptibility testing (BRCA1/2). In particular, we assessed concerns about group discrimination, perceptions of the advantages and disadvantages of BRCA1/2 testing, and the relationship between concerns about discrimination and the potential benefits of genetic testing. Methods: A telephone survey of a population-based sample of 200 Jewish women. Results: A minority of women (17%) in this study expressed concern or discomfort with Jews being offered BRCA1/2 testing. Most women believed there were scientific reasons for testing Jews (71%), and only 5% of women felt that research that focused on Jews was bad for Jews as a group. Increased concern about genetic discrimination was associated with women who were highly educated (odds ratio 2.68). Forty percent of women surveyed were interested in BRCA1/2 testing, 40% were not interested, and 20% were uncertain about whether they would obtain BRCA1/2 testing. Increased interest in genetic testing was associated with a desire to obtain information about children's risk of disease and valuing information for its own sake.

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Section: Tablementioning

confidence: 99%

A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing

Lehmann

Weeks²,

Klar³

et al. 2002

Genetics in Medicine

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“…The Icelandic Medical Association and the World Medical Association opposed the Act. 67 Similarly, the Icelandic Psychiatric Association, the Association for Ethics in Science and Medicine (Mannvernd), and the National Bioethics Committee opposed the Bill mainly because there was no provision for informed consent. The Icelandic Parliament attempted to address the criticisms of the proposal by redrafting the Health Sector Database Act, and the regulation that governs the establishment and running of the database was issued in January 2000.…”

Section: Case-studiesmentioning

confidence: 99%

Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective

Godard

Schmidtke

Cassiman³

et al. 2003

Eur J Hum Genet

147

107

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The purpose of this paper is to formulate a professional and scientific view on the social, ethical, and legal issues that impact on data storage and DNA banking practices for biomedical research in Europe. Many aspects have been considered, such as the requirements for data storage and DNA banking in the public and private sectors in Europe and the issues relating to DNA banking, that is to say the consent requirements for the banking and further uses of DNA samples, their control and ownership, and the return of benefit derived from DNA exploitation to the community. The methods comprise primarily the review of the existing professional guidelines, legal frameworks and other documents related to the data storage and DNA banking practices in public and private sectors in Europe. Then, the issues related to DNA banking were examined during an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Paris, France, 07 -08, April, 2000. A total of 50 experts from 12 European countries attended this workshop. It came out that DNA banking for medical and research purposes is indispensable. It facilitates the constitution of large collections, sharing of samples, multiple testing on the same samples, and repeating testing over the years. However, banking organization is complex, requires multiple actors, and concerns are expressed in various countries. International standardization of ethical requirements and policies with regard to DNA banking has been recommended. Such standardization would facilitate a greater protection of individuals as well as future international cooperation in biomedical research.

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Models of biobanks and implications for reproductive health innovation

Capps

2015

Monash Bioeth. Rev.

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Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the 'public good' framework of UK Biobank. These diametric models have both featured 'the public interest' as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why are explained, and the effects this has on conditions for participation are critiqued, before reflecting on how each model might have an impact on reproductive health research.

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World Medical Association opposes Icelandic gene database

Cited by 11 publications

References 0 publications

A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing

A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing

Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective

Models of biobanks and implications for reproductive health innovation

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