[Congressional Record (Bound Edition), Volume 153 (2007), Part 1]
[Extensions of Remarks]
[Page 1364]
[From the U.S. Government Publishing Office, www.gpo.gov]




             THE GENETIC INFORMATION NONDISCRIMINATION ACT

                                 ______
                                 

                        HON. LOUISE M. SLAUGHTER

                              of new york

                    in the house of representatives

                       Tuesday, January 16, 2007

  Ms. SLAUGHTER. Madam Speaker, it is with great pride today that I 
reintroduce the Genetic Information Nondiscrimination Act. I have 
championed this bill for nearly 12 years, and I am hopeful that this 
will be the year that it is finally enacted into law.
  We all watched with excitement when the first phase of the Human 
Genome project was successfully completed in April 2003, as scientists 
finished sequencing the human genome. As a result of this breakthrough, 
scientists have now identified genetic markers for a variety of chronic 
health conditions, thereby increasing the potential for early treatment 
and prevention of numerous diseases.
  Genetic issues are insinuating themselves into not only health care 
decisions, but into many other facets of Americans' lives. For example, 
under a program called Dor Yeshorim, Hasidic youth take a battery of 
genetic tests to determine whether they are carriers for any of 10 
serious genetic disorders. Young men and women who are both carriers 
for a given disorder are discouraged from courting each other, based on 
the fact that there would be a 25 percent chance that their children 
would be born with a genetic disorder.
  Today, there are over 15,500 recognized genetic disorders, affecting 
13 million Americans. Yet, each of us possesses some potentially lethal 
genes. And despite the scientific advances that are helping people 
prevent these diseases or diagnose them early, those who partake of 
this innovative technology become potential victims of genetic 
discrimination. This legislation works to eliminate that potential.
  In the past, some have called this legislation ``a solution in search 
of a problem'' and suggest that genetic discrimination is rare, if it 
even happens at all. Unfortunately this is not the case. Despite the 
fact that these tests are potentially life-saving, many Americans have 
not taken advantage of this technology because they fear discrimination 
by insurance companies and their employers.
  And these fears are not unfounded. Throughout the 1970s, many African 
Americans were denied jobs, educational opportunities, and insurance 
based on their carrier status for sickle cell anemia, despite the fact 
that a carrier lacked the two copies of a mutation necessary to get 
sick. In 1998, Lawrence Livermore Laboratories in Berkeley was found to 
have been performing tests for syphilis, pregnancy, and sickle cell on 
employees without their knowledge or consent for years. In 2000, the 
Burlington Northern Santa Fe Railroad performed genetic tests on 
employees without their knowledge or consent.
  These abuses have only fed the public fear of genetic discrimination. 
Much to the detriment of America's public health and the future 
benefits of scientific research, this fear has led many individuals to 
decide against having genetic tests or participating in genetic 
research.
  A study conducted from 2001 to 2003, surveyed 86,859 adults about 
their willingness to undergo genetic testing. The results, published in 
June 2005, revealed that 40 percent of participants surveyed felt 
genetic testing was not a good idea for fear that health insurance 
companies might deny or drop them from their insurance plan.
  The Genetics and Public Policy Center at Johns Hopkins University 
conducted similar surveys. In 2002, 85 percent of those surveyed did 
not want employers to have access to their genetic information. By 
2004, that number had risen to 92 percent. In 2002, 68 percent of those 
surveyed said their genetic information should be kept private from 
health insurers; by 2004, it had increased to 80 percent.
  Fears about privacy do not just resonate with the public. Health care 
professionals are also hesitant to make their genetic information 
available. In one survey of genetic counselors, 108 out of 159 
indicated that they would not submit charges for a genetic test to 
their insurance companies primarily because of the fear of 
discrimination. Twenty-five percent responded that they would use an 
alias to obtain a genetic test so as to reduce the risk of 
discrimination and maximize confidentiality. And, 60 percent indicated 
they would not share the information with a colleague, because of the 
need for privacy and fear of job discrimination.
  Clearly, fear of discrimination plays a significant role in a 
person's decisions about whether to take a genetic test; whether to do 
it under one's own name; paying out of pocket versus seeking insurance 
reimbursement; and with whom the information would be shared, including 
health care providers, coworkers, and family members. The American 
people desperately want protections against genetic discrimination 
guaranteed under federal law and the Genetic Information 
Nondiscrimination Act provides these protections.
  This bill has broad support from the health community. The Coalition 
for Genetic Fairness which consists of 141 organizations has been 
outspoken in their support for GINA. Here in the House, along with my 
colleagues Ms. Biggert, Ms. Eshoo, and Mr. Walden, we are joined by 
over 135 original cosponsors. The Senate has passed it twice, and even 
the White House has come out in support of this bill.
  GINA provides the protections from genetic discrimination that 
Americans want and would allow genetic research to move forward in this 
country so we can all live healthier lives.
  I urge its quick passage.