New Legislation to Protect Genetic, Health Privacy

May 1, 1996

Should an insurance company be able to deny children medical coverage because their mother died of an inherited heart defect that her children may or may not carry? That is the dilemma facing a California father who cannot get family medical coverage under his group plan as a result of his wife's death. And that is a dilemma crying out for congressional intervention.

Should an insurance company be able to deny children medical coveragebecause their mother died of an inherited heart defect that herchildren may or may not carry? That is the dilemma facing a Californiafather who cannot get family medical coverage under his groupplan as a result of his wife's death. And that is a dilemma cryingout for congressional intervention.

Scientific knowledge of the secrets hidden deep inside our genesis advancing at an unbelievable rate. It seems that we learn ofa new genetic discovery on a weekly basis. But, as researchersfind the genetic mutations that cause specific diseases or thatappear to cause a genetic predisposition to specific diseases,a host of ethical, legal, and social complications arise thatwill take our greatest efforts to resolve.

The Human Genome Project is a 15-year, multinational researcheffort to "read and understand" the chemical formulathat creates each of the 80,000 to 100,000 human genes.

If spelled out using the first four letters of the four chemicalsthat make up DNA, that formula would fill 1,000 one-thousand-pagetelephone books, representing 3 billion bits of information. Often,just a single letter out of place is enough to cause disease.

We cannot read this entire genetic script yet, but advances inscience indicate that we will be able to soon. In fact, althoughthe Project is scheduled for completion in 2005, at its currentpace, many experts believe it will be done before then. That meansthat we need to begin making some very difficult public policydecisions now, before those decisions are made by self-interestedparties.

Senators Connie Mack and Mark Hatfield introduced legislationin the Senate on this issue, and I have submitted the companionbill, H.R. 2690, the Genetic Privacy and Nondiscrimination Act,in the House.

This measure will establish guidelines concerning the disclosureand use of genetic information, and protect the health privacyof the American people. Genetic information must not be used (misused)to deny access to health insurance.

Remove Barriers to Testing

This bill will not only safeguard health privacy and help preserveinsurance coverage, it will also remove potential barriers togenetic testing. Eliminating the concern about reprisals by insurancecompanies will facilitate more effective use of genetic testsas they are developed and, therefore, promote cures and treatments.This will sustain the global leadership of the biomedical researchindustry in the United States.

However, if you can lose your health insurance because your genesshow that someday you might require that insurance, clinical trialswill become impossible to conduct, and new treatments and curesmay not be developed. Consequently, it is important to have thisprotection, which will ultimately lead to improved health carefor all Americans.

Health Coverage Availability Act

Congress is moving rapidly now on legislation to reform the Americanhealth insurance system. I joined in approving the House versionof health care reform on March 28.

This bill, the Health Coverage Availability and AffordabilityAct, will reform health insurance to expand access, ensure portability,and control costs. It will also prevent insurance companies fromdenying coverage to people with preexisting health conditions.

This measure will benefit all Americans, especially the 39 millionindividuals who lack any type of health insurance coverage. TheSenate passed its version of this bill in April, and a conferenceagreement could be on the President's desk in a matter of weeks.

This health care reform legislation was considered in my committee,the Commerce Committee. Sponsored by Congressman Michael Bilirakis(R-FL), this measure was a well-thought-out piece of legislation,and I am proud to have been a co-sponsor. Portions of this billwere merged with those of two other committees with jurisdictionover health care. This final version was the measure approvedon March 28.

One provision of this bill prohibits denying health insurancecoverage to an employee or beneficiary on the basis of "healthstatus," which is defined as an individual's "medicalcondition, claims experience, receipt of health care, medicalhistory, evidence of insurability, or disability."

Fortunately, I was able to add two simple words to this list underhealth status--"genetic information." As medical sciencediscovers what secrets our genes carry, the potential misuse ofthat information, whether through insurance or some other venue,becomes an ever-increasing possibility.

The Next Civil Rights Battle?

It is imperative that we develop the strongest possible statutoryprotections against applying this information toward genetic discrimination.In the future, these discoveries of genetic information couldlead to employment discrimination. That is why the Congress needsto conduct hearings on my bill and to pass the rest of this importantlegislation. I believe that discoveries of genetic informationcould be the civil rights battle of the next century.

These two words, genetic information, added to the health carebill made a good piece of legislation better. It is vital thatwe ensure that no American is ever deprived of health insurancebecause of a misspelling in a genetic script that the individualcould not control and did not choose.