By Amy Barrett There's no doubt: IBM (IBM) is way out in front on genetic privacy. On Oct. 10, IBM Chairman and CEO Sam Palmisano sent a memo to employees announcing the company was revising its policies to prevent the use of genetic information in making personnel decisions. Big Blue's move prompts the question: Is a flood of gene-based health data about workers available right now?
Not exactly. Certainly, tests exist that can evaluate the risk of developing certain diseases. Kathy Hudson, director of the Genetics & Public Policy Center at Johns Hopkins University, says 800-or-so genetic tests are available, including those for certain neurodegenerative diseases and to determine the risk of developing certain cancers.
"WAVE OF THE FUTURE." But Hudson says the large databanks, or registries, that collect samples for research into certain diseases are voluntary. It's not as if a human resources manager can tap into a repository of genetic information on prospective or current employees without their knowledge.
But the future could look very different. Hudson says over the last decade the number of genetic tests has expanded tenfold -- and she figures that trajectory will continue. These will include tests that not only show whether someone is at risk of developing certain diseases but also will predict how well that individual will respond to certain prescription drugs.
This will be "the wave of the future," says Alan Westin, president of the Center for Social and Legal Research.
SMART BUSINESS. And while Westin says he isn't aware of companies that are specifically using that information to make hiring or promotion decisions, it's conceivable that could eventually happen in some quarters. Consider the fact that many are offering employees disease-management programs aimed at evaluating a worker's risk for developing conditions like diabetes and helping those people make lifestyle and medical decisions to head off or manage those risks.
Such programs could be linked to genetic tests that help identify those who could benefit most. And that, of course, could make employees wary about divulging such information.
IBM's move is as much about smart business as it is about fair employment practices. Big Blue is a big player in medical-information technology, offering a variety of computing technologies for medical and pharmaceutical research. Among them: its powerful Blue Gene supercomputing system.
GENETIC HISTORY. IBM knows that if people think medical information will be used against them, they may resist getting the tests its clients are generating. And that could hamper growth of a key market. "This is going to be extraordinarily valuable to medicine," says Caroline Kovac, general manager of IBM health care and life sciences. "But it can't happen if patients don't have a high degree of confidence in the privacy of that information."
IBM got that same message from some of its own employees. Harriet Pearson, IBM's chief privacy officer, says while IBM heard concerns about genetic privacy from patient advocates and other outside groups, it also got questions from employees participating in a big research project with National Geographic.
Known as the Genographic Project, it's a five-year program that will generate a massive DNA database. The goal is to create a map that will reveal how humans populated the earth. Part of the project involves getting DNA samples from volunteers -- and some 9,000 IBM workers have contributed.
GROWING TREND? But Pearson says some employees did ask exactly how the data would be used. Pearson says that questioning made her and others wonder what concerns IBM employees had in general about such matters. "What about an employee who wants to take a genetic test for certain kinds of breast cancer?" she wondered.
Pearson says she has received inquiries from employer groups wanting to understand how IBM made its decision. Clearly, Big Blue hopes others will follow suit. And while legislation is pending in Congress that would prevent employers from misusing genetic information, it's far from a sure thing. The question now is whether IBM will remain alone in its stance -- or whether it's a harbinger of things to come. Barrett is BusinessWeek's Philadelphia bureau chief