[Congressional Record (Bound Edition), Volume 154 (2008), Part 5]
[Extensions of Remarks]
[Page 7486]
[From the U.S. Government Publishing Office, www.gpo.gov]




          THE GENETIC INFORMATION NONDISCRIMINATION ACT (GINA)

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                        HON. SHEILA JACKSON-LEE

                                of texas

                    in the house of representatives

                       Wednesday, April 30, 2008

  Ms. JACKSON-LEE of Texas. Madam Speaker, I rise today in support of 
H.R. 493, ``The Genetic Information Nondiscrimination Act, GINA.'' I 
would like to thank my colleague, Congresswoman Louise McIntosh 
Slaughter, from New York for introducing this important legislation. I 
would also like to thank my colleagues on Energy and Commerce, Ways and 
Means, Education and Labor committees for their leadership in this 
highly contentious and complex health issue.
  The Genetic Information Nondiscrimination Act, GINA, would restrict 
health insurers' (Title I) and employers' (Title II) acquisition and 
use of genetic information in several ways. It is also supported by 
consumer groups, the medical profession, researchers, the medical 
products industry and pharmaceutical companies.
  Since the first bills were introduced in the 103rd Congress, many of 
the arguments and positions supporting and opposing genetic 
nondiscrimination legislation have remained largely unchanged. The 
simple fact is without protection, people are apprehensive about 
seeking potentially beneficial genetic services or participating in 
much needed clinical research.
  Alex Haley, the gifted author of Roots, stated on the front page of 
his book that ``In all of us there is a hunger, marrow deep, to know 
our heritage--to know who we are and where we have come from. Without 
this enriching knowledge there is a hollow yearning. No matter what our 
attainment in life, there is still a vacuum, an emptiness and the most 
disquieting loneliness.''
  When author Alex Haley revealed his Roots in the late 1970's, 
everyone in the Nation, it seemed, wondered about their own great-
great-great grandparents. As a result, the genealogical quest fever 
spread, particularly among African Americans.
  It took Haley more than a decade to trace back several generations, 
but as most Black people realize, not many of similar heritage will be 
able to unearth their lineage even that soon. That's because few, if 
any, reliable records of the centuries-long Atlantic slave trade remain 
to help in the search. That's what became all too apparent to 
rheumatologist Dr. Paul Plotz in 1992, when ``a chance occurrence'' 
pointed his research on a rare muscle disorder to West Africa and ``the 
greatest undocumented migration of modern times.''
  As Haley pointed out, people have an inherent interest in knowing 
their heritage. Our investment in modern science, specifically the 
Human Genome Project, is poised not only to reveal medical truths about 
ourselves and our potential for health, but also to help us make that 
connection to our past.
  While some of my colleagues are focused that GINA will provide 
further incentives and additional opportunities for litigation against 
employers, they seem to forget the very real concern of individual 
protections. In an age where electronic databases are easily tampered 
with and private information is passed around like a bad cold, we must 
focus on the rights of individuals and their families when dealing with 
such a complex and contentious issue.
  At a time when we want people to seek out preventative care and gain 
greater health literacy, we want to ensure them that they are safe and 
big brother is not selling their detailed information to the highest 
bidder.
  Researchers at Penn State University have stated that from a medical 
viewpoint, African genetic diversity is important in understanding 
genetic diseases of African Americans and for finding treatment methods 
for contagious diseases that originated in Africa. These researchers 
have said that if they could identify the genetic changes that provided 
this protection, then they might be able to find treatment methods for 
the diseases.
  These revolutionary discoveries are due to a diverse group of people 
feeling secure enough with their doctors, nurses, and health insurance 
companies that they participate in genetic testing and research 
studies.
  We exclaim that we want better health care, greater incidences of 
prevention, better understanding of current diseases, and most 
importantly more cures to the illnesses of Americans. This is what 
genetic testing and research can do. If we allow employers and health 
insurance companies to manipulate the data to further restrict 
American's access to quality care, then we should not support this 
bill.
  However, if we are for access to quality health care, if we are for 
greater understanding of infectious diseases and mutations, if we are 
for privacy protections in medical records and payment systems . . . 
then we must give our full support to this bill.
  Thank you, Madam Speaker, for your leadership in the area of health 
care access, this is yet one more area that allows us to support an 
individual's right to care without fear of retribution by increased 
health insurance payments or even worse, denial of care altogether. 
Vote in support of access, understanding, and privacy.

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