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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. [ABSTRACT FROM AUTHOR]

The success of the Human Genome Project raised expectations that the knowledge gained would lead to improved insight into human health and disease, identification of new drug targets and, eventually, a breakthrough in healthcare management. However, the realization of these expectations has been hampered by the lack of essential data on genotype--drug-response phenotype associations. We therefore propose a follow-up to the Human Genome Project: forming global consortia devoted to archiving and analysing group and individual patient data on associations between genotypes and drug-response phenotypes. Here, we discuss the rationale for such personalized medicine databases, and the key practical and ethical issues that need to be addressed in their establishment. [ABSTRACT FROM AUTHOR]

This corrects the article DOI: 10.1038/nbt.4015 [ABSTRACT FROM AUTHOR]

The Personal Genome Project (PGP) is an effort to enroll many participants to create an open-access repository of genome, health and trait data for research. However, PGP participants are not enrolled for studying any specific traits and participants choose the phenotypes to disclose. To measure the extent and willingness and to encourage and guide participants to contribute phenotypes, we developed an algorithm to score and rank the phenotypes and participants of the PGP. The scoring algorithm calculates the participation index (P-index) for every participant, where 0 indicates no reported phenotypes and 100 indicate complete phenotype reporting. We calculated the P-index for all 5,015 participants in the PGP and they ranged from 0 to 96.7. We found that participants mainly have either high scores (P-index > 90, 29.5%) or low scores (P-index < 10, 57.8%). While, there are significantly more males than female participants (1,793 versus 1,271), females tend to have on average higher P-indexes (P = 0.015). We also reported the P-indexes of participants based on demographics and states like Missouri and Massachusetts have better P-indexes than states like Utah and Minnesota. The P-index can therefore be used as an unbiased way to measure and rank participant's phenotypic contribution towards the PGP. [ABSTRACT FROM AUTHOR]

The article focuses on the personal genome-tests and the outdated models of regulation. It states that personal-genomics services should not be permitted to circumvent governance for the reason they propose. It relates that companies contend that individuals should have the right to decide whether to take genetic tests and coordinate in genetic research, and that state protection is paternalistic and patronizing, impeding individual rights to join and consume in the production of genomic knowledge. It mentions that protectionism and empowerment are simply different sides of the same governance coin.

A letter to the editor is presented in response to the article about genetic privacy in the previous issue.

Focuses on the issue of medical ethics in research. Overview of the principles proposed by B. M. Knoppers and R. Chadwick that could offer guidance in the ethics review of population-based genetics research; Problem with the procedural outgrowths of ethics review.