Bio-IT: Potential of technology raises privacy issues

Computerworld - BOSTON -- To fully reap the benefits of biotechnology on research and medicine, society may have to change the way it thinks about privacy and personal information.

During a panel discussion at the BioIT World conference today and a keynote address given by Compaq Computer Corp. Chairman and CEO Michael Capellas, the idea of modeling patients to enhance treatment was heralded as one of the great benefits that might emerge from bio-IT research.

Patient modeling would allow researchers to create a model of a patient based on his medical records, parents' medical records and quite possibly his gene type. By creating this virtual patient, physicians could then try different treatments on the model to see what effect they would have on the real patient.

Capellas called the concept the Holy Grail of biotechnology.

However, such innovations would require societal changes in attitudes, said panelist John Murphy, CIO at CuraGen Corp., a pharmaceutical company in New Haven, Conn.

"Our society is going to have to accept the fact that we're going to take the genotype of everyone in the room and that it is going to be in a database someplace," Murphy said.

But sharing health information raises concerns about privacy and security and could have consequences affecting an individual's life insurance eligibility and employment options, he said. These hurdles would have to be overcome, along with the technological challenge of pulling data from thousands of different types of databases and putting it in a form that can be used by medical researchers and physicians.

If these challenges could be met, then some day, physicians would be able to build models based on an individual's medical records and create personalized drugs for treating disease, Murphy said.

There are more immediate benefits that could be reached by better and stronger systems, said Adel Mikhail, senior vice president at LabBook Inc. in McLean, Va.

For example, if a clinician knows that 50% of the people who receive a certain treatment will survive and 50% will die, researchers could use models to identify those who don't respond to a drug and provide them with an alternative treatment, increasing their survival rates, Mikhail said.

But it will take a long time for these applications to be developed. It will require taking data that is haphazardly entered in some cases by researchers all over the world who are following different rules and creating computer systems to make sense of it all, said Manuel Glynias, senior vice president at Lion Bioscience AG in Heidelberg, Germany. These systems