Drugmakers have shelled out hundreds of millions of dollars for access to patient information that may help drug discovery. They have struck deals with systems including Danville, Pa.-based Geisinger; Rochester, Minn.-based Mayo Clinic and New York City-based Mount Sinai Health System.
Patients who opt to have their genetic profiles analyzed at health systems are drawn in by the promise of free genetic testing that could show their risk of disease and the opportunity to contribute to scientific advancement. But they may not realize the other ways their genetic data is being used and how hospitals and drugmakers could profit from it, legal experts and patient advocates told the Journal.
Under typical deals, hospital patients consent to share their medical records, blood or other biological samples for research. Hospitals remove any identifiable information before sending the data to drugmakers, which sequence the DNA. Drugmakers then analyze the results and medical record data for links to genetic traits and diseases.
Agreements between hospitals and drugmakers usually include a clause that prohibits hospitals from sharing data mined with other companies and drug companies from sharing data with a hospital’s rivals, according to the report.
Those in favor of gene-sequencing deals say that they spur innovation and allow for discoveries at a much quicker pace.
Access the full report here.
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