Home // International Journal On Advances in Life Sciences, volume 11, numbers 1 and 2, 2019 // View article

Enforcing Genetic Consent and Restrictions through a Privacy-Focused Ontology

Authors:
Michael Reep
Bo Yu
Duminda Wijesekera
Paulo Costa

Keywords: Genetic Privacy; Electronic Medical Records; Ontology; Health Care; Genomic Medicine, Informed Consent

Abstract:
The use of genetic information has greatly expanded from the original focus of providing actionable data to health care providers and researchers for diagnostic and research purposes. Potential uses of this information encompass the insurance industry, employment, and law enforcement plus the more recent development of Direct-to-Consumer (DTC) tests for genealogical research. Federal and State Laws have been developed in the United States to improve privacy protections and prevent the misuse of genetic data. However, there is a wide variety of laws, regulations and restrictions governing the release criteria, level of protection required, and specificity in permitted use. The attribute-focused component of these laws matches information regarding the requester, genetic contributor with the purpose and data being released to come up with an access decision. While the attribute-based portion is easily implemented, there are numerous aspects in the laws and regulations that require more complex decision making, dictate further post-release restrictions, and specific directives for consents. A rule-base specification of these complexities can be used as a policy language to enforce data releases from electronic health records and gene pools. Our previous work developed the attribute focused aspect of the ontology along with a workflow-based prototype. The final refinements to the ontology address the more complex requirements for consent, situational validations that must be confirmed, restrictions that must be enforced after data release, actions for data protection, retention and destruction by the recipient, and informing the genetic data recipients of potential penalties for violating these restrictions. Overall this framework provides the foundation for bolstering privacy protections, enforcing the laws and regulations, and preventing the unlawful disclosures of genetic information.

Pages: 85 to 98

Copyright: Copyright (c) to authors, 2019. Used with permission.

Publication date: June 30, 2019

Published in: journal

ISSN: 1942-2660