In recent years, researchers from around the world have begun developing repositories of tissues and socio-demographic data for genetics and other biomedical research. These biobanks, often linked with patient health care records, have been an invaluable resource in helping to understand cancer, diabetes, and various genetic-related disorders. The specimens and data are especially valuable when combined and analyzed with specimens and data from other countries, because rare variations can be detected and examined. Sharing by researchers of specimens and data across international borders may be hampered by privacy laws in several countries that limit disclosure or receipt of certain specimens or health information. The study, relying on a worldwide team of experts, will compile and analyze the privacy laws in 23 countries undertaking substantial biobank development. It will then propose legal and technical strategies to accommodate important privacy interests while facilitating international access and use for research.

Public Health Relevance

Biobanks, often with linked clinical records, have been established in numerous countries to facilitate genetic and genomic research. International collaborations of researchers using biobanks have been hampered by privacy laws in various countries. Developing an expert compilation of privacy laws in countries performing biobank-based research and recommending measures to harmonize these laws will enable international research cooperation and coordination.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
1R01HG006838-01
Application #
8339607
Study Section
Special Emphasis Panel ()
Program Officer
Mcewen, Jean
Project Start
2014-09-05
Project End
2016-07-31
Budget Start
2014-09-05
Budget End
2015-07-31
Support Year
1
Fiscal Year
2014
Total Cost
$275,114
Indirect Cost
$67,992
Name
University of Louisville
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
057588857
City
Louisville
State
KY
Country
United States
Zip Code
40202
Henderson, Gail E; Wolf, Susan M; Kuczynski, Kristine J et al. (2014) The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J Law Med Ethics 42:344-55