Message from the Director
The Battle Over Genetic Privacy
Huntington F. Willard, PhD
Who wants to look under the hood of your genome and what do they want to know?
We have no idea how the battle over genetic privacy will play out. But I suspect that years from now, we will look back upon October 2005 as a pivotal time.
First, IBM, the largest technology company in the world, took the preemptive and unprecedented step of vowing never to use genetic information in its hiring practices or in determining health benefits for its 300,000 employees. Clearly, given its extensive involvement in computational research, including in genomics, IBM has a vested interest in setting itself up on the right side of the genetic discrimination issue. But whatever its motives, the company should be applauded.
Two weeks after IBM's announcement, Wal-Mart unwittingly betrayed a more jaundiced view of its workforce. In a memo leaked to The New York Times, a Wal-Mart executive mused about ways to cut benefit costs, including discouraging unhealthy job applicants, cutting employer 401(k) contributions and reducing company-paid life insurance to $12,000. Given the company's willingness to contemplate such draconian measures toward a labor force whose average wage is roughly $17,500 per year (and 55 percent of whom are not covered by company insurance), it's hard to imagine Wal-Mart ever stepping up to the plate against genetic discrimination the way its Fortune-500 compatriot IBM did.
What might tempt Wal-Mart to look at genetics as a way of reducing health expenses? You don't get to be a $200-billion company by ignoring the bottom line. And increasingly, the cost of benefits is eating into corporate profits. One can imagine the reaction from some shareholders if Wal-Mart were to announce that it would never consider pre-existing genetic conditions in making hiring decisions.
Some (including more than a few members of the House of Representatives) have argued that all this concern about genetic privacy is a tempest in a teapot and that there is no need for federal legislation banning genetic discrimination and ensuring privacy of genetic or genomic information. The fact is, they say, there are very few cases of genetic discrimination on record, and some 33
states already have at least some laws protecting citizens against it on the books. Moreover, the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits almost all employers from considering genetic risk factors as preexisting conditions or from selectively choosing what conditions they will or won't cover ("medical underwriting"). Nonetheless, hopes run high in some quarters that the House will at least agree to consider a version of the Genetic Non-Discrimination Act that passed the Senate earlier this year by a vote of 98-0.
And yet October also showed us some cracks in the façade. On October 4, the Chicago Bulls traded one of its star players, Eddy Curry, after he refused to take a DNA test to determine whether he carried a mutation that would predispose him to sudden death from cardiomyopathy, an excessive thickening of the heart muscle. Bulls General Manager John Paxson maintained that, in demanding the DNA test, his number one concern was for Curry’s health. Given that Curry was already known to have an irregular heartbeat, can we really begrudge the Bulls for wanting a more complete picture of its player’s risk? Ironically, barely two weeks after the Curry dustup, Atlanta Hawks center Jason Collier died at home after experiencing difficulty breathing. An autopsy revealed an enlarged heart possibly due to cardiomyopathy.
As the price of genome technology drops, the number of employer-employee conflicts over genetic privacy, as in the Bulls versus Curry, will only increase. Right now to sequence a human genome from the first base to the last costs about $2 million. Not cheap to you or me, but a far cry from the several billion dollars we spent the first time around. The goal, of course, is to reduce the cost by another three orders of magnitude: the $1000 genome. In genome sciences circles, the figure has become a mantra and a Holy Grail of sorts. NIH has vowed that it can be achieved within ten years. More than a few companies have bet their business plans on much faster developments.
So what happens then? What if, a decade from now, a large company (or its insurer) needs to spend just $1000 per employee in order to uncover every genetic flaw in its workforce? What would Wal-Mart do then?
Heck, what would Duke do then? Would we begrudge Coach K wanting to prescreen his players' genomes for heart defects, if only to protect their well-being? Can we imagine a scenario under which the genome sequences of everyone else in the Duke community were encoded on our DukeCards and used to assign each of us to a benefit category? Or would Duke consider going the way of IBM and "just say no"?
There are no easy answers. But if American institutions—from the board room to the hardwood—are contemplating these issues, then perhaps it’s time for Duke to do the same.
Huntington F. Willard
Director