Opinion: Will Privacy Fears Stifle New Medical Frontiers?

Computerworld - Imagine you brought home a new baby girl today. And along with the standard package of well-baby materials came her electronic medical record. To your fascination, the electronic file was stored on an encrypted card backed up with the federal government in Washington. This file would follow her throughout life, enabling her doctors to detect diseases in their earliest stages.

For the sake of your child’s health, you’d have a hard time saying no to that, right?

Then imagine having the peace of mind that your daughter would probably never have an adverse reaction to prescription drugs, because the drugs would be designed specifically for her and the DNA she keeps on file with your preferred pharmaceutical companies.

If this sounds as implausible as a sci-fi novel, think again. These kinds of strides toward personalized medicine are already being made in the pharmaceutical industry and considered in the halls of Congress.

In a speech in March, Eli Lilly CEO Sidney Taurel outlined these advances, promising a biomedical revolution springing forth from the Human Genome Project. These new discoveries, he said, would move medicine from a treatment industry to a prevention industry, eliminating waste and cutting cost.

"The ultimate vision would be to predictably deliver to the patient the right dose of the right drug at the right time," he said.

The stakes are high. According to a study by the U.S. Department of Health and Human Services (HHS), between 2% and 7% of hospital admissions result in adverse drug reactions, with 770,000 injuries and deaths occurring each year.

But will people trust the health care industry, and possibly the government, to collect and share their sensitive health information and comprehensive medical histories in order to improve this situation?

I recently sat down to explore this question with the privacy leaders of pharma giants Eli Lilly and Schering-Plough. We spoke about where we are with these types of medical advances and the kinds of privacy protections they’re requiring.

So, what’s the status of e-medical records?

According to Stan Crosley, chief privacy officer at Lilly, HHS is leading the push for the integration of Americans’ medical files. HHS’s charge is to meet President Bush’s objective that most Americans will have access to secure e-health records by 2014. To establish the interoperability standards needed to make this happen, HHS formed the American Health Information Community (AHIC).

According to its Web site, the AHIC foresaw that this amount of data sharing would raise privacy risks, and so last year, it dedicated one of its four working groups to privacy. The co-chairman of this working group is Kirk Nahra, a respected attorney in the privacy industry who is associated with Wiley Rein LLP in Washington.