Posted on: Thursday, June 28, 2001

Editorial
Genetic discrimination has no workplace role

The questions — ethical, medical, legal and social — raised by the mapping of the human genome and all that it portends are vastly complex.

Testing for genetic markers can tell us if we have a predisposition to certain conditions and diseases. With testing, patients can seek preventive treatment or can be vigilant about early detection. And the day may come when certain diagnoses will no longer bring fear because genetic breakthroughs will bring cures.

Scientists and ethicists quite rightly worry that all this will be for naught if people believe the results of genetic testing will be used against them for employment, when applying for insurance or in other instances.

The issue is not new. Congress has debated genetic discrimination for years. But the issue deserves much more attention. President Bush did much to raise our collective consciousness about the debate in his radio address last weekend.

The president said he was worried genetic information could be abused by employers and insurance companies and vowed to work with Congress to make genetic discrimination illegal.

There is clear bipartisan support to say it is wrong to discriminate against someone simply on the basis of the genetic code they were born with. But there is little agreement on how far the law should go.

What is the aggrieved party's redress and how would complaints be handled? Should complaints be run through administrative channels before litigation is an option? Should there be a cap on damages, as Bush wants?

There also must be clarity in this debate on why we deserve protection from genetic discrimination. Bush said one of the reasons genetic discrimination is unjustified is that it involves little more than medical speculation. A predisposition to cancer does not mean one will get it. He's right, of course, but the issue goes beyond the uncertainty of genetic results.

The first rule that must govern all efforts in genetic testing is protecting the rights of the individual.

This is an issue far too important to be left to special interest groups, whether medical, business or insurance. For the sake of our children and their children, who will more fully reap the benefits of genetic breakthroughs, we need to ensure that legislation truly protects our rights and privacy while enhancing opportunities for research.