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Next-generation sequencing and global data sharing challenge many of the governance mechanisms currently in place to protect the privacy of research participants. These challenges will make it more difficult to guarantee anonymity for participants, provide information to satisfy the requirements of informed consent, and ensure complete withdrawal from research when requested. To move forward, we need to improve the current governance systems for research so that they are responsive to individual privacy concerns but can also be effective at a global level. We need to develop a system of e-governance that can complement existing governance systems but that places greater reliance on the use of technology to ensure compliance with ethical and legal requirements. These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research.

Original publication

DOI

10.1146/annurev-genom-082410-101454

Type

Journal article

Journal

Annu Rev Genomics Hum Genet

Publication Date

2012

Volume

13

Pages

415 - 431

Keywords

Ethical Review, Ethics Committees, Genetic Privacy, Genome, Human, Genomics, Humans, Information Dissemination, Informed Consent, International Cooperation, Sequence Analysis, DNA, Tissue Banks