The coming problem of providers linked to multiple laboratories specializing in genetic tests mirrors the problems providers and their data partners are experiencing today exchanging other forms of healthcare data, according to a panel of genetics experts at the Healthcare Information and Management Systems Society meeting in Orlando, Fla., Tuesday.
Panel members were Samuel Sandy Aronson, director of information technology, Harvard Medical School and the Partners HealthCare Center for Genetics and Genomics, Cambridge, Mass.; and Diane Keogh, corporate director of research computing, PartnersHealthcare System, Wellesley, Mass.
With genetic and genomic data, Aronson said, "What ultimately we're hoping to get to is a hub. It reduces the many-to-many problem of many providers and many labs."
Aronson outlined an architecture similar to what is being contemplated for regional health information organizations and health information exchanges in which an entity in the center of a group of providers handles the task of interface development. Designing the many interfaces that would otherwise be necessary to connect each provider's electronic health-record systems with the various laboratory systems would prove too expensive, in addition to being a daunting technical challenge.
Keogh said privacy and security issues will be significant and complex with genetic data, even more of an issue than they are now with other sensitive healthcare information. Committee work, done in advance, was one recommendation to head off pushback, but also because state and federal privacy laws are, at present, vague and inadequate.
"The Massachusetts law says if you are symptomatic, you can treat it (a genetic test result) like any other result," Keogh said. "But if you are asymptomatic, only the clinician who ordered that test can see the result."
Both Aronson and Keogh said IT systems must be configured to enable patients to provide consent for and control over the release of their genetic information.
For example, future consent control systems will need to be able to respond when some breakthrough occurs in genetic testing when a new treatment or diagnostic capability, not available today, emerges in the future.