Genomic Data Policy Framework and Ethical Tensions
This white paper aims to begin addressing the need for new or modified policies by proposing a genomic data policy framework and corresponding set of ethical tensions for policy-makers, business leaders, researchers, patients and others to consider before taking actions that affect or involve the collection and use of human genomic and genetic data for research and clinical use. Generally, genomics refers to all genes and their interrelationships and genetics focuses on a single or set of genes. The distinction is important and nuanced in several fields; however, for the purposes of this paper, the authors will refer to genomics when our thinking applies to data about all or some genes.
This white paper aims to begin addressing the need for new or modified policies by proposing a genomic data policy framework and corresponding set of ethical tensions for policy-makers, business leaders, researchers, patients and others to consider before taking actions that affect or involve the collection and use of human genomic and genetic data for research and clinical use. Generally, genomics refers to all genes and their interrelationships and genetics focuses on a single or set of genes. The distinction is important and nuanced in several fields; however, for the purposes of this paper, the authors will refer to genomics when our thinking applies to data about all or some genes.
This paper is written from a “future of healthcare” perspective, and with a focus on LMICs and emerging economies.