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Genetic screens are tools used to identify genes and mutations responsible for phenotypes of interest. Genetic screens help identify individuals or a group of people at risk of developing  genetic diseases and help them with early intervention, targeted therapy, and reproductive options.
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Microbial Communities in Nature and Laboratory - Interview
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Microbial Communities in Nature and Laboratory - Interview

Published on: May 28, 2007

From genetic privacy to open consent.

Jeantine E Lunshof1, Ruth Chadwick, Daniel B Vorhaus

  • 1Department of Molecular Cell Physiology, c/o room M236, Faculty of Earth and Life Sciences, VU University Amsterdam, De Boelelaan 1085, 1081 HV Amsterdam, The Netherlands. jeantine.lunshof@falw.vu.nl

Nature Reviews. Genetics
|April 2, 2008
PubMed
Summary

High-throughput genomic technologies generate vast data, straining research ethics. The Personal Genome Project demonstrates that scientific innovation and ethical considerations, like open consent, can be developed together.

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Area of Science:

  • Genomics
  • Bioethics
  • Bioinformatics

Background:

  • High-throughput genomic technologies are producing unprecedented volumes of data, including genome-wide association studies and genome-phenome datasets.
  • This data surge challenges existing research ethics frameworks, particularly concerning privacy, confidentiality, and informed consent.
  • Re-examining ethical principles is crucial for responsible genomic research.

Purpose of the Study:

  • To demonstrate the feasibility of co-developing scientific innovation with ethical frameworks.
  • To present the Personal Genome Project's open-consent model as a viable approach.
  • To explore how ethical considerations can keep pace with technological advancements in genomics.

Main Methods:

  • Utilizing the open-consent framework implemented in the Personal Genome Project.
  • Analyzing the practical application and outcomes of this ethical model.
  • Evaluating the integration of scientific advancement and ethical guidelines.

Main Results:

  • The Personal Genome Project's open-consent framework is a feasible model for managing ethical challenges in genomic research.
  • Co-development of scientific innovation and ethics is achievable.
  • The study provides a practical example of balancing data generation with participant rights.

Conclusions:

  • The open-consent model offers a scalable solution for ethical genomic research.
  • Integrating ethical considerations early in research design is essential for innovation.
  • Future genomic projects can benefit from adopting similar co-development strategies for science and ethics.