The Right to Genetic Privacy--Are We Unlocking the Secrets of the Human Genome Only to Risk Insurance and Employment Discrimination
![handle is hein.journals/utahlr2000 and id is 715 raw text is: The Right to Genetic Privacy? Are We Unlocking
the Secrets of the Human Genome Only to Risk
Insurance and Employment Discrimination?
I. INTRODUCTION
Imagine the following: you are a healthy middle-aged adult. Breast,
ovarian, or prostate cancer runs in your family. Knowing of your potential
increased susceptibility to these diseases, your physician recommends that
you participate in an ongoing, local research project. As your physician
explains, the research project, which encourages enrollment of high-risk
individuals and their families, bases participation on those with family
histories such as yours. Upon enrollment, the research project uses a DNA-
based genetic test to detect the mutated gene' that increases your likelihood
of developing the tested-for disease by eighty percent.2 Your physician is
careful to point out that testing positive for a mutated gene only results in
a higher probability, not an absolute certainty, of developing the disease?
Although there is no present cure for these diseases, your physician explains
that future research hopes to develop suitable preventive measures or cures
through genetic counseling or gene therapy.4 However, your physician
warns you that a positive test result could leave you feeling powerless,
depressed, and wishing you had elected not to undergo testing.' In addition,
knowing that your genes predispose you to disease can affect how you view
and interact with your environment or make important life decisions, such
as marriage and child birth.6
Thus, participating in the local research project can be of variable
utility for an individual and his or her family members. Without the
certainty that an individual will develop the disease and without adequate
'We all carry the identified breast, ovarian, or prostate cancer genes. However, whether
an individual is genetically predisposed to these diseases depends upon whether the
individual carries the genetic mutation in such genes. Thus, it is improper for an individual
to say that an individual tested positive for the prostate cancer gene. Rather, the correct
response is that an individual tested positive for the genetic mutation in the prostate cancer
gene. See Interview with LisaMensching, Genetic Counselor, High Risk Breast Cancer Clinic
at the Huntsman Cancer Institute, in Salt Lake City, Utah (Jan. 7, 2000) [hereinafter
Mensching Interview]. See infra note 66 and accompanying text.
2See Mensching Interview, supra note 1. This percentage is based on an individual's
increased susceptibility over his of her lifetime. See id.
3See id. See infra notes 75-86 and accompanying text.
4See Mensching Interview, supra note 1.
5See id.
6See id.
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