Monday, October 10, 2005

Mr. Screen Genes

Today, IBM announced that it won't use genetic information to make decisions in such matters as hiring and benefit calculations.

LOS ANGELES - International Business Machines Corp., the world’s largest computer maker, on Monday pledged not to use genetic data to screen employees and applicants in what it said was the first such move by a major corporation to safeguard a new category of privacy.

IBM also said it would refrain from using the data in determining eligibility for health-care or benefits plans.

The pledge comes as Congress debates a proposed privacy bill that would bar health insurers and employers from discriminating against people with a genetic predisposition to disease....

“Genetic information comes pretty close to the essence of who you are, it’s something you can’t change,” IBM’s chief privacy officer, Harriet Pearson, told Reuters.

“It has nothing to do with your employment, how good your contributions are, how good of a team member you are, so making a policy statement in this case is the right thing to do,” she said.

This points up the more frightening aspects of the matter. I am happy that IBM saw fit to make this pronouncement, but there are hundreds of thousands of potential employers, as well as insurers and others who would love to have this information available. And available it is, as any blood sample, urine test or even an envelope contains the necessary information for anyone to extract your complete DNA sequence. If you get arrested, even if it is for a misdemeanor, or on a charge which is thrown out for lack of evidence, your DNA is added to a national database (supposedly limited to law enforcement use, but who can guarantee that it won't end up elsewhere?) Obviously, it would save employers and insurers money if they could, for example, choose not to hire someone who was at a high genetic risk for cancer or early-onset Alzheimer's disease. But this brings up questions beyond privacy (although that is a crucial one, and at the center of the current debate).

The question it brings up is this: In a capitalist (as opposed to a socialist) society, the assumption is that everyone is allowed to compete for a job, with the most qualified people at the top of the list. In theory, at least, almost anyone can become qualified if they work hard enough. Of course, the United States is neither a pure capitalist nor a pure socialist society, but on that scale it is much closer to the former. We acknowledge that there are those who may never be able to become qualified because of, for example, a birth defect or serious injury, and make provisions (at least in most cases) to take care of them, but we fall far short in many ways both for them and for those who were born into situations where the opportunities for advancement are limited or negligible.

However, we now see that there is a very thin line protecting us from adding to the list of those who may be denied opportunity, those who simply by their genetic make-up have what might be called, 'inferior genes' (this is frighteningly close to eugenics).

And not all corporations have taken as mature an attitude about this as IBM.

Four years ago, railroad conglomerate Burlington Northern Santa Fe Corp. agreed to abstain from submitting its employees to genetic testing after being sued by federal regulators.

The legislation in front of Congress, H.R. 1227, the Genetic Information Nondiscrimination Act, is necessary because of just such situations. There will be those companies who respect the privacy of an employee's DNA, and there will be those who do not. Over time, as those who are willing to take advantage of this situation gain a competitive advantage, there will be pressure of the law does not say otherwise for others to change their policy and do the same.

The The Genetic Alliance, a Washington-based patients advocacy group, called IBM’s policy “remarkable” and predicted it would spur other U.S. corporations to follow suit.

I hope they are right, but we still need the legislation. Please contact your Congressperson and urge them to support H.R. 1227.


Anonymous said...

Something really bothers me about this whoe genetic DNA "testing" thing. Even beyond any privacy or employment issues. Okay, gotta go make a new foil hat...wore out the last one. Oy.

Anonymous said...

oy...that's WHOLE genetic.

oops! :-)

Anonymous said...

Thought you be interested in IBM's Harriet Pearson talking further about the genetic privacy policy on our new healthcare transformation blog, HealthNex...

Eli Blake said...

Thank you Mr. Mason.

I went there, and Ms. Pearson pointed out how immediately this announcement coincided with an announcement by the National Basketball Association to require DNA testing of players. The concerns are motivated by Chicago rookie Eddie Curry, who may or may not have a heart defect.

I understand why an organization like the NBA and a team like the Bulls may be motivated by a desire to avoid investing millions of dollars in a guy who may, someday, drop dead (like what happened to Hank Gathers once in a college game).

However, this does not justify the tests. A certain level of risk has always been inherent in the hiring of anyone. The Boston Celtics some years back took a chance on Len Bias. They lost. That is part of the game. There are always clues as to a person's behavior that will allow someone to prevent this kind of risk (that is why we conduct background checks). I have no problem with them looking into, say, a person's criminal record and factoring that in to the risk/benefit equation in deciding whether to hire them. In Stringer's case, he showed up at camp 20 pounds overweight. The Vikings had the opportunity to choose whether to cut him right away, order him to reach playing weight in a specified period of time, or have him work it off.

But DNA is not a behavioral issue. It is a birth issue, in that some people are born with genes that will eventually cause them to become dead or incapacitated. In may cases, they don't know if they have those genes or not. Further, if we allow this to become a condition of employment, then we risk creating a whole new underclass-- future cancer or Alzheimer's victims who are therefore forced to work menial jobs because no one will want them to have a career at their company while they sit around and wait for what their genes say is inevitable (and just how inevitable is 'inevitable'? We still don't know all the answers to that).

If we do that, are we as a society willing to pay for them, including the medical bills when their uninsured person ends up with those diseases? If the answer is 'no,' then there is no excuse that can justify genetic testing.

Again, my hat is off to IBM. They did the right thing. Will others? Not always, that is why we need the legislation.