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From genetic privacy to open consent

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.

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Correspondence to Jeantine E. Lunshof.

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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.

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FURTHER INFORMATION

Jeantine Lunshof's homepage

American Society of Human Genetics

Encyclopedia of DNA Elements (ENCODE) project

Genetic Information Nondiscrimination Act

International HapMap Project

Research Program on Genes, Environment and Health (RPGEH) at Kaiser Permanente

Mission statement of the Personal Genome Project

NCBI Database of Genotype and Phenotype

The Personal Genome Project (PGP)

UK Biobank

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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Lunshof, J., Chadwick, R., Vorhaus, D. et al. From genetic privacy to open consent. Nat Rev Genet 9, 406–411 (2008). https://doi.org/10.1038/nrg2360

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