Aetna 2002 Annual Report Download - page 33

Genetic Privacy and Discrimination
 , ..
The Louis C. Lasagna Professor of Experimental Therapeutics
Professor of Neurology, Medicine and Pharmacology
University of Rochester
Huntington’s disease may be the prototype of
genetic challenges to come.
As knowledge of our genetic make-up becomes more available and we become more aware of
our individual genetic risks, concerns about privacy and discrimination loom large. Individuals
with known genetic predisposition already harbor fears, perceived and real, about loss of pri-
vacy and discrimination.
Imagine being a healthy adult in the prime of life and learning that you carry the gene
for soon-developing Huntington’s disease, a disabling and lethal neurological disorder, that
you may also have passed on to your children. The hereditary consequences are diabolical
because signs and symptoms of this incurable illness do not typically emerge until after the
childbearing years. The horrors of disabling illness and shortened life are compounded by
the loss of individual and family privacy, concerns about discrimination in the workplace,
erosion of confidentiality, and impediments in obtaining health care and adequate insur-
ance. Affecting about , patients in the United States, Huntington’s disease may be
viewed as a prototype foreshadowing the genetic challenges of the st century.
The first steps in deciphering the human genome have provided extraordinary insights
and prospects for biomedical advances to more effectively treat and possibly avoid the ill
effects of genetic disease. With this knowledge, comes the capacity to learn with great
precision our genetic risks and burdens, including those for cancer, heart disease, diabetes,
Alzheimer’s disease and hundreds of other medical conditions, treatable or not. Genetic
testing of healthy individuals is already resulting in a shift from treatment of symptoms to
predictive and preventive care, and from defining patients as those who are sick to those
who are healthy but at risk for illness.
However, sensible questions are being asked about the potential for misuse of the vast
amount of information generated. Concerns about genetic privacy and discrimination have
not yet become a burning issue for the public at large, but the landscape will change over the
next decade as genetic information becomes increasingly available and the public becomes
more aware of individual risks.
Government, academia and the private sector will need to make a more concerted invest-
ment of resources to develop our knowledge base and policies, and to address the burgeoning
issues surrounding genetic privacy and discrimination. As genetic technology speeds forward,
education of health care providers, policy-makers, and the public will need to accelerate as well.
Will application of genetic knowledge and development of reasoned public policy be able to
keep pace with the technological advances?
 