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Genomic Data Policy and Ethics: Unlocking the Value of Genomic Medicine for All

Genomic medicine is the study of our genes (DNA) and their interaction with our health. Genomics investigates how a person’s biological information can be used to improve their clinical care and health outcomes example through effective diagnosis and personalized treatment. Genomic and genetic data – the digitized record of a person’s DNA – is an especially sensitive form of human health data, and its collection and use support the scientific research and improved diagnostics and treatments that underscore precision medicine. Genomic and genetic data collection is accelerating, including in low- and middle-income countries (LMICs) and emerging economies, to fill critical gaps in the understanding of populations not traditionally included in research and to support more precise clinical care

Genomic medicine refers to more precise disease screenings, diagnostics and treatments based on a deeper understanding of our DNA, the unique set of instructions that guides how each person’s body develops and functions. Most of the research informing genomic medicine has occurred in Caucasian populations. While over 99% of DNA is the same in all people, the differences can have important health implications.

The lack of diversity in research studies can lead to blind spots, like not knowing which disease-causing genetic “glitches” such as those that increase one’s risk of breast cancer, sickle cell anemia, or cystic fibrosis  appear more frequently in certain populations.

Genomic research on HIV infections provides an example of how more inclusive research can address existing disparities in genomic data, and the corresponding adverse impact on specific populations. HIV-1 represents 95% of global HIV infections for the virus across its subtypes or genetically distinct versions. Subtype HIV-1B represents about 12% of global infections and is predominant in the Americas, Western Europe and Australasia. Subtype HIV-1C accounts for about half of global HIV-1 infections and is commonly found in Africa and India.

Using policy and ethics frameworks to balance the promise and opportunities of genomic data with the real-world practicalities of implementing such initiatives provides a path forward for countries. The potential for international and national-level frameworks informed by this white paper and early pilot projects can support the development of standards and guidelines that will inform policies and regulations

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