Communal discourse as a supplement to informed consent for genetic research

Foster, Morris W.; Eisenbraun, Ann J.; Carter, Thomas H.

doi:10.1038/ng1197-277

Cited by 54 publications

(24 citation statements)

References 22 publications

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“…However, the definition of the ''public'' is subject to dispute and the nature of their involvement is unclear. The need to inform, include and obtain the consent of the community or the population is put forward without specifying the character of this involvement [69][70][71]. Finally, the process of building trust is central to all kinds of biobank projects, whether they rely on patient or on general population studies.…”

Section: Public Engagement and Trustmentioning

confidence: 99%

Trends in ethical and legal frameworks for the use of human biobanks

Cambon‐Thomsen¹,

Rial‐Sebbag²,

Knoppers³

2007

European Respiratory Journal

237

204

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Numerous studies of genetic epidemiology and post-genomics in respiratory diseases rely on the use of biobanks, defined as organised biological sample collections with associated personal and clinical data. The use of biobanks is increasing and raises several ethical issues. What are the ethical trends and legal frameworks in the post-genomic era? Are there new issues in relation to the developments of techniques and new study designs? How does this affect the clinician's attitudes and relationship with the patients?The main ethical issues encountered are: informed consent; confidentiality; secondary use of samples and data over time; return of results; and data sharing. Different levels and modalities of dealing with such issues are identified and vary from legally binding measures to ''soft'' regulations, such as ethical recommendations by various committees or professional organisations.A further level of complexity appears with the increasing international dimension of such activities in a context in which national positions vary on those topics. There is a tension between a necessary level of diversity in ethical positions and an indispensable common pedestal of principles and procedures to manage these issues in order to foster research.Current legal and ethical trends favour the facilitation of secondary use of samples, more biobank openness, balanced with a growing attention to dialogue and public/stakeholder consultation, an increased role for research ethics committees and more sophisticated data protection and governance structures.

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Section: Public Engagement and Trustmentioning

confidence: 99%

Trends in ethical and legal frameworks for the use of human biobanks

Cambon‐Thomsen¹,

Rial‐Sebbag²,

Knoppers³

2007

European Respiratory Journal

237

204

View full text Add to dashboard Cite

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“…39,40 Some have suggested that the social group itself should be involved in the process of research. 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.…”

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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“…The analysis we propose focuses on genetic research with American Indian and Alaska Native communities, as several participatory models have been tried in these contexts (18 …”

mentioning

confidence: 99%

Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations.

Sharp

Foster

2002

Environ Health Perspect

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The National Bioethics Advisory Commission has proposed that regulatory oversight for research with human subjects be extended beyond the protection of individual research participants to include the protection of social groups. To accomplish this, the commission recommends that investigators and ethics review boards a) work directly with community representatives to develop study methods that minimize potential group harms, b) discuss group implications as part of the informed consent process, and c) consider group harms in reporting research results. We examine the utility of these recommendations in the context of research with American Indian and Alaska Native communities. Because much attention has been given to the question of how best to consult with members of these communities in the design and conduct of research, we believe it behooves investigators to consider the lessons to be learned from research involving American Indians and Alaska Natives. After describing several difficulties surrounding the application of the commission's approach to these research contexts, we propose a research agenda to develop best practices for working with local communities in the ethical assessment of epidemiologic and environmental health research.

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Communal discourse as a supplement to informed consent for genetic research

Cited by 54 publications

References 22 publications

Trends in ethical and legal frameworks for the use of human biobanks

Trends in ethical and legal frameworks for the use of human biobanks

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

Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations.

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