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From genetic privacy to open consent

Nature Reviews Genetics 9, 406–411 (2008) | Download Citation

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Abstract

Recent advances in high-throughput genomic technologies are showing concrete results in the form of an increasing number of genome-wide association studies and in the publication of comprehensive individual genome–phenome data sets. As a consequence of this flood of information the established concepts of research ethics are stretched to their limits, and issues of privacy, confidentiality and consent for research are being re-examined. Here, we show the feasibility of the co-development of scientific innovation and ethics, using the open-consent framework that was implemented in the Personal Genome Project as an example.

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Acknowledgements

The authors wish to thank three anonymous reviewers for their comments. J.L. thanks M. Cornel and T. Pieters of VU university medical center, Amsterdam, for discussions. R.C. gratefully acknowledges the support of the Economic and Social Research Council (ESRC). The work was part of the programme of the ESRC Centre for Economic and Social Aspects of Genomics.

Author information

Affiliations

  1. Jeantine E. Lunshof is at the Department 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 E. Lunshof

  2. Ruth Chadwick is at Cardiff Law School, Cardiff University, Law Building, Museum Avenue, Cardiff, CF10 3AX, Wales, UK.

    • Ruth Chadwick

  3. Daniel B. Vorhaus is at Robinson, Bradshaw & Hinson P.A., 101 North Tryon Street, Suite 1900, Charlotte, North Carolina 28246-1900, USA.

    • Daniel B. Vorhaus

  4. George M. Church is at the Department of Genetics, Harvard Medical School, New Research Building, Room 238, 77 Avenue Louis Pasteur, Boston, Massachusetts 02115, USA.

    • George M. Church

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Competing interests

G. M. C. is currently donating profits from companies in the personal genomics space to the Personal Genome Project at the recommendation/approval of the Harvard Conflict of Interests committee.

Corresponding author

Correspondence to Jeantine E. Lunshof.

Glossary

Genetic exceptionalism

The view that being genetic makes information, traits and properties qualitatively different and deserving of exceptional consideration.

Non-distributive generalization

Generalizations that entail information about individuals as belonging to a particular group with specific properties. Any particular individual, however, may or may not have these properties.

Dictionary attack

A technique for breaking a security system by trying to determine a decryption key or a password by searching a large number of possibilities.

L-diversity

A new method for the protection of privacy against adversaries with background knowledge, which requires that the distribution of a sensitive attribute in each equivalence class has the least well-represented values.

Open-source technology

A technology that is publicly available, freely distributed by the developer community and that is for the user community to modify and improve.

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DOI

https://doi.org/10.1038/nrg2360

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