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Louis

Louis Wang

Year of Award: 2015 Award State: New South Wales Health And Medicine > General
The Dr Dorothea Sandars Churchill Fellowship to explore optimal systems and partnerships to foster a local and national cardiac genomic network - USA
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Conclusions and Recommendations

  • Cardiovascular disease is a leading cause of death in Australia and remains one of the largest burdens on the economy. Advances in the field of cardiac genomics will help explain why some patients respond better than others to treatment and different disease trajectories in heart disease.
  • Local genomic studies should ideally be linked to an electronic health record, with appropriate digital security.
  • In sites where an electronic medical record system is not present, retrospective linkage through linked data of administrative datasets might prove useful and a compromise solution. Due to issues relating to identification and individual privacy, however, patients will need to have explicit and prior consent for data-linkage.
  • The eMERGE network in the United States offers a successful example of multiple local genomic research programs joining together in a collaborative network.
  • Ethical, legal, and society issues are an important consideration during genomic research. Successful programs in the United States have invested considerable resources in ensuring that there is appropriate engagement, informed consent, oversight, legal protection and security applied during the set up and conduct of genomic research.

Keywords: Genomic research, cardiovascular, de-identification, privacy, electronic health record, derived health record, biobank, network, personalised medicine

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