Privacy Issues in the Sharing of Genetic Information

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Scientific breakthroughs and technological advancements have led to the emergence of personalized medicine — a practice based on the use of an individual's genetic profile to guide health care decisions made about the prevention, diagnosis, and treatment of disease.

Genomic DNA sequencing, the technology that launched the biomedical revolution, has accelerated rapidly and the costs of sequencing continue to decrease. It took $1 billion and 13 years to sequence the first draft of the human genome. In January 2014, Illumina introduced technology that can sequence a human genome for $1,000. Now that the sequencing of human genomes is getting faster and less expensive, the health care industry is coming closer to realizing the promise of personalized medicine.

By integrating gene sequencing and historical treatment from a patient’s electronic health record, big data analytics have built upon the advances in genomic sequencing to facilitate research on more effective treatments for diseases, such as cancer. Such efforts, however, offer just one example of the multitude of initiatives by government and industry in the areas of genomic research, clinical decision making, and consumer health tracking with data generated by wearable devices, smartphones and low-cost diagnostic kits, including genetic data. All of these initiatives depend to some degree on the ability of organizations to aggregate, integrate, and use genetic information. They also depend on and the permissible uses of genetic information as governed by state and federal privacy laws.

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DISCLAIMER: Because of the generality of this update, the information provided herein may not be applicable in all situations and should not be acted upon without specific legal advice based on particular situations.

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