[Congressional Record Volume 153, Number 53 (Tuesday, March 27, 2007)]
[House]
[Page H3084]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2007

  The SPEAKER pro tempore. Pursuant to the order of the House of 
January 4, 2007, the gentleman from Florida (Mr. Stearns) is recognized 
during morning hour debates for 5 minutes.
  Mr. STEARNS. Madam Speaker, last week the Energy and Commerce 
Committee marked up H.R. 493, Genetic Information Nondiscrimination 
Act. Two other committees of jurisdiction have also voted on this same 
bill.
  Many people have been remarking that we have been working for over a 
dozen years on this particular piece of legislation and this subject. I 
count myself among them because in 1995 I was proud to be named the 
first chair of the Congressional Task Force on Medical Records and 
Genetics by then-Commerce Committee Chairman Tom Bliley. Indeed, in the 
Health Insurance Portability and Accountability Act of 1996 (HIPAA) 
markup, I was successful in adding two words to a list of protections: 
``Genetic information,'' which is in the HIPAA law today.
  I have continued my engagement, authoring bills in the last several 
Congresses to prohibit genetic nondiscrimination in health insurance. 
While I agree conceptually with the intent, this particular piece of 
legislation I have mentioned earlier, gives rise to many concerns.
  First, I can support legislation which would surgically target what 
people are fearing: They worry about being excluded or charged a higher 
rate from a health insurance agent or fired or not hired in the first 
place by an employer because of predictive, speculative genetic 
information that in no way exhibits in their current health status.
  However, with the wording ``request or require,'' which is in the 
bill, this bill goes beyond that to cast a shadow upon any use of 
genetic information by a health plan or physician. This bill should ban 
misuse of genetic information, but not impede the flow of information 
between provider, patient and plan.
  Let's not stifle health services, pharmacies, health records 
services, health counseling or health education. I think we should not 
fear beneficial, patient-friendly medical opportunities. We should 
harness those, while drawing a tighter box around the misuses that are 
feared. Ban misuses, not ban all uses.
  Secondly, I am troubled by the rather murky, broad definitions in 
this legislation. In particular, by the definitions of ``genetic test'' 
and ``genetic information.'' This legislation does not clarify that 
information regarding current health status is not exempted by the 
bill's prohibition. For example, the mere fact that someone has an O or 
AB blood type, also detects that person has the O or AB genotype, which 
under the definition of this bill is a genetic test. This bill could 
ensnare the most routine lab test of a health exam: A blood panel to 
check for heart, kidney or liver functioning.
  And beyond health applications, at the Health Subcommittee March 13 
hearing, Dr. Francis Collins, head of the National Human Genome 
Research Institute, acceded as much. When Ranking Member Nathan Deal 
questioned him if this bill, GINA, covers certain tests, Dr. Collins 
answered: ``To the extent that those tests are conducted in a way that 
conducts genotypes, mutations, or chromosomal changes, they would 
qualify as a genetic test.'' These include forensic DNA identification 
tests, tests for organ donors to match organ tissues, paternity tests, 
and tests to select safer and more effective drugs based on your 
genetic profile. For example, if the bill means to sweep in genetic 
tests performed on cancer tumors, it will prevent tests such as Her 2 
genetic tests given to women with breast cancer, designed to determine 
if their tumors are responsive to drug therapy. Such therapy is both 
risky and very costly for patients without such a specific gene marker.
  In the employment setting, this bill muddies what an employer will be 
able to do in a worker's compensation or occupational substance abuse 
situation; very important. Currently, an employer has the right, in 
fact, the legal responsibility, to conduct drug tests in the name of 
public safety for cause, and to examine medical records in a work comp 
case to determine the nature of an injury. If a blood test, therefore a 
genetic test, is included in the medical record, a hapless employer 
could have an unintentional disclosure on their hands.
  Finally, it is unclear if this legislation will preempt or create an 
unworkable patchwork with the nearly 40 States' genetic bans.
  Most have a bright line distinction between ``current health'' versus 
``genetic'', and excluding paternity and forensic uses. Florida's law 
does. And, the author of the legislation, Representative Slaughter, did 
herself include current health wording in prior versions of her 
legislation.
  Genetic information is personal, powerful, permanent, and sensitive. 
Let us continue to work to make this bill a tool for protecting 
Americans against ill uses of their genetic profile, while not impeding 
the flow of information, routine employment activity, and the delivery 
of health care.

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