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Ethical issues and GenomEUtwin.

Jennifer R Harris1, Gonneke Willemsen, Tiina Aitlahti

  • 1Division of Epidemiology, Department of Genes and Environment, The Norwegian Institute of Public Health, Oslo, Norway. jennifer.harris@fhi.no

Twin Research : the Official Journal of the International Society for Twin Studies
|November 20, 2003
PubMed
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Large-scale genetic research projects require integrated ethics components to manage risks and maximize scientific benefits. GenomEUtwin

Area of Science:

  • Genomics
  • Bioethics
  • Population Genetics

Background:

  • The post-genomic era features numerous large-scale genetic and genomic research projects.
  • Multinational initiatives like GenomEUtwin aim to link genotypic and phenotypic data across centers.
  • These projects raise significant ethical, legal, and social implications (ELSI).

Purpose of the Study:

  • To describe the role of the Ethics Core within the GenomEUtwin project.
  • To present an overview of the ethical guidelines and principles guiding GenomEUtwin.
  • To outline major ethical concerns and complexities arising from diverse national legislations.

Main Methods:

  • Integration of ethics components into the project's structure and function.
  • Development and application of ethical guidelines and principles.

Related Experiment Videos

  • Analysis of ethical, legal, social, and economic implications through empirically based ethics research.

    • Main Results:

    • The Ethics Core operates across the entire GenomEUtwin project.
    • Guidelines and principles have been established to address ethical concerns.
    • Complexities arising from diverse national legislations have been identified.

    Conclusions:

    • Full integration of ethics is crucial for maximizing scientific profit and minimizing participant risk in large-scale genetic research.
    • Empirically based ethics research is vital for understanding the broader implications of human genetics and genomics.
    • GenomEUtwin serves as a model for addressing ethical challenges in multinational genetic research.