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.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel ()
Program Officer
Mcewen, Jean
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
University of Louisville
Internal Medicine/Medicine
Schools of Medicine
United States
Zip Code
Rothstein, Mark A (2016) International Health Research after Schrems v. Data Protection Commissioner. Hastings Cent Rep 46:5-6
Keis, Aime (2016) Biobanking in Estonia. J Law Med Ethics 44:20-3
Stoddart, Jennifer; Chan, Benny; Joly, Yann (2016) The European Union's Adequacy Approach to Privacy and International Data Sharing in Health Research. J Law Med Ethics 44:143-55
Motta-Murguia, Lourdes; Saruwatari-Zavala, Garbiñe (2016) Mexican Regulation of Biobanks. J Law Med Ethics 44:58-67
Harrell, Heather L; Rothstein, Mark A (2016) Biobanking Research and Privacy Laws in the United States. J Law Med Ethics 44:106-27
Hendriks, Aart C; van Hellemondt, Rachèl E (2016) Regulating Privacy and Biobanks in the Netherlands. J Law Med Ethics 44:68-84
Hoppe, Nils (2016) Privacy Laws and Biobanking in Germany. J Law Med Ethics 44:35-44
Kaye, Jane; Bell, Jessica; Briceno, Linda et al. (2016) Biobank Report: United Kingdom. J Law Med Ethics 44:96-105
Nnamuchi, Obiajulu (2016) Biobank and Genomic Research in Uganda: Are Extant Privacy and Confidentiality Regimes Adequate? J Law Med Ethics 44:85-95
Saulnier, Katie M; Joly, Yann (2016) Locating Biobanks in the Canadian Privacy Maze. J Law Med Ethics 44:7-19

Showing the most recent 10 out of 29 publications