Reconciling Genomics Advancement with Responsibility to Health Care Stakeholders Through Governance Standards

Open Access
Author:
Gaddis, Allison Lynn
Area of Honors:
Interdisciplinary in Management and Risk Management
Degree:
Bachelor of Science
Document Type:
Thesis
Thesis Supervisors:
  • Forrest Briscoe, Thesis Supervisor
  • David Cather, Honors Advisor
  • Srikanth Paruchuri, Honors Advisor
Keywords:
  • genomics
  • precision medicine
  • governance
  • patient data
  • data responsibility
  • health care organizations
  • hospitals
  • privacy
  • stakeholders
  • ethics
Abstract:
The genomics practice is positively and rapidly transforming the health industry through human genome sequencing and individualized medical care, which is denoted as precision medicine. However, the large scale proliferation of human DNA data in genomic databases is raising new risks to involved individuals and their personal data. As precision medicine becomes more widespread, improved regulatory and governance requirements at health care organizations become all the more important in order to responsibly maintain the benefits and innovation derived from genomics. Health care organizations must adjust genomic database governance policies to enhance data responsibility features of data privacy, security, use, and accuracy without impeding the continuation of precision medicine. Through a comparative analysis of societal attitudes and a current genomic database governance structure used in practice, a balance can be found between genomics advancement and responsible organizational data management practices.