Abstract
Public–private partnerships (PPPs) have been increasingly used to spur and facilitate innovation in a number of fields. In healthcare, the purpose of using a PPP is commonly to develop and/or provide vaccines and drugs against communicable diseases, mainly in developing or underdeveloped countries. With the advancement of technology and of the area of genomics, these partnerships also focus on large-scale genomic research projects that aim to advance the understanding of diseases that have a genetic component and to develop personalized treatments. This new focus has created new forms of PPPs that involve information technology companies, which provide computing infrastructure and services to store, analyze, and share the massive amounts of data genomic-related projects produce. In this article, we explore models of PPPs proposed to handle, protect, and share the genomic data collected and to further develop genomic-based medical products. We also identify the reasons that make these models suitable and the challenges they have yet to overcome. To achieve this, we describe the details and complexities of MSSNG, International Cancer Genome Consortium, and 100,000 Genomes Project, the three PPPs that focus on large-scale genomic research to better understand the genetic components of autism, cancer, rare diseases, and infectious diseases with the intention to find appropriate treatments. Organized as PPP and employing cloud-computing services, the three projects have advanced quickly and are likely to be important sources of research and development for future personalized medicine. However, there still are unresolved matters relating to conflicts of interest, commercialization, and data control. Learning from the challenges encountered by past PPPs allowed us to establish that developing guidelines to adequately manage personal health information stored in clouds and ensuring the protection of data integrity and privacy would be critical steps in the development of future PPPs.
Highlights
Public–private partnerships (PPPs) have been increasingly used to spur and facilitate innovation in a number of fields
With the advancement of technology and of the area of genomics, these partnerships started focusing on genomic research projects that aim to advance the understanding of diseases that have a genetic component and to develop personalized treatments
The article describes the details and complexities of MSSNG, International Cancer Genome Consortium (ICGC), and 100,000 Genomes Project (100,000 GP), the three PPPs that focus on large-scale genomic research to better understand the genetic components of autism, cancer, rare diseases, and infectious diseases with the intention to find appropriate treatments
Summary
Public–private partnerships (PPPs) have been increasingly used to spur and facilitate innovation in a number of fields. This diversity enables them to better identify and understand patterns, variants, and correlations among the multitude of factors that cause or prompt a disease so as to innovate and eventually provide accessible health-care services [14, 15] These advantages constitute the rationale for the involvement and uptake by research centers, academic institutions, and governmental agencies in PPPs. Private companies have reasons as well for getting involved in CCSs and in PPPs in the area of genomic and medical research. Business associate is defined as a person or organization, different from a member of a covered entity’s workforce that performs certain functions or activities or that provides certain services to a covered entity involving the use or disclosure of individually identifiable health information Some of these activities include claims processing, data analysis, utilization review, and billing.
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