House Committee on Education and Labor
U.S. House of Representatives

Mr. Speaker, I rise in support of this legislation.  While I do not – by any means – think this is a perfect bill, I do believe it contains a number of important improvements over prior versions of the legislation.  More importantly, it marks a commitment by this Congress to ensure that the law of the United States protects American workers and health care consumers from discrimination on the basis of their genetic make-up.  Because that goal is so critical, I will vote for this bill today, and urge my colleagues to do likewise.

I’d like to commend my colleague, and fellow member of the Committee on Education and Labor, Representative Judy Biggert, for her years of work and dedication on this important issue.  She’s been persistent and effective on so many issues that have come before this Committee and this Congress, and she should be commended for adding this important bill to her list of legislative accomplishments.

As I noted during our Committee’s consideration of this bill, I believe the title of the legislation before us – “The Genetic Information Nondiscrimination Act” – embodies a proposition that all members of our Committee and, indeed, our Congress would endorse.  Simply put, no employee should face discrimination on the basis of genetic makeup or on any characteristic other than the ability to do the job.  Similarly, no employee should risk his or her health insurance status simply because of the possibility that they might someday develop an illness. 

This bill was drafted with those fundamental principles in mind, and I believe that through the legislative process, we’ve taken steps toward ensuring that the bill we pass on the floor today ensures that those principles are fulfilled, while minimizing the potential for unintended consequences.

I would like to point out a number of improvements in the bill that I think merit attention. 

I am pleased that the bill before us today embodies the same logic as a past executive order issued by President Clinton to ensure that this legislation would not inadvertently serve as a broad, new federal mandate requiring all insurance plans and employers to cover all treatments related to genetic-related conditions.  That’s exactly the type of unintended consequence we were seeking to avoid, and I’m pleased we were able to work this out.

Second, I would highlight a provision in the legislation that ensures that employers, who are currently subject to a number of confidentiality and recordkeeping requirements under law, are not burdened by yet another redundant set of paperwork requirements.  The bill before us today provides that with respect to genetic information, if an employer maintains employee records and treats them as it does confidential medical records under the Americans with Disabilities Act, it is in compliance with this new genetics law. 

Third, I applaud a significant improvement in the bill – namely, its extension of genetic non-discrimination protection to all Americans.  One of the issues raised during our Committee’s consideration of the bill was concern that the bill’s protections did not adequately extend to cover children in utero or at early stages of development, or in connection with in vitro fertilization and other technologies.  I am very pleased that the final bill before us addresses these issues to the satisfaction of all the Members on both sides of the aisle who worked in good faith to ensure the broadest protections possible.

The bill contains a number of other improvements over prior versions, representing issues we were able to work through over the past couple of months and which demonstrate how the Committee process is meant to work.  We were presented with well-intentioned legislation; heard meaningful testimony on it and its potential impact on employers and employees alike; raised and debated legitimate concerns; and worked together to bridge the gap between where we began and where we stand today.  I thank the staff from both sides of the aisle for making this a reality.

I would be remiss if I did not point out concerns I have with the bill, and express my hope that as the legislative process continues, and if and when the provisions of this bill are administered, we give due weight to these concerns.

I remain concerned that the bill’s penalty provisions are overbroad and will potentially subject employers to punitive damages for simple paperwork violations.  I am equally concerned that the bill we pass today will not set a single, national standard, but still leave employers subject to a patchwork of varying requirements on a state-by-state basis.  And finally, I think the bill would be significantly improved if we made clear that employers would not be held liable for the acquisition and use of genetic information where such use was required or justified by business necessity. 

As we send this bill to the United States Senate for consideration, I would urge my colleagues in that body to take up and address these issues.  Beyond that, as courts and administrative agencies interpret and enforce these laws, I would urge them to heed the intent of Congress – namely, that this bill’s most egregious penalties must be reserved for the most egregious violations of the law, and that our intent is not to ensnare employers acting in good faith in a legal web of penalties and damages.

As I noted at the outset of my remarks, our actions today will ensure that the law of the United States protects American workers and health care consumers from discrimination on the basis of their genetic make up – a goal I think is shared by every Member of this House.  I urge my colleagues to support this legislation, and reserve the balance of my time.

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