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chapter 4 | Questions of Values and Ethics 53 CikguOnline
recovery is expected. In situations in which little or survived more than 5 years post treatment. Bianca
no improvement is expected, the issue of whether undergoes a lumpectomy followed by radiation and
the good outweighs the bad prevails. Suffering chemotherapy. Her cancer is found to be nonhormon-
induced by technology may include physical, spiri- ally-dependent. Due to her age and family history,
tual, and emotional components for the patient and Bianca’s oncologist recommends that she see a geneti-
the families. cist and have genetic testing for the BRCA-1
Today, many infants who have low birth weight and BRCA-2 genes. Bianca makes an appointment
or birth defects, who not so long ago would have to discuss the testing. She meets with the nurse who
been considered unable to live, are maintained on has additional education in genetics and discusses
machines in highly sophisticated neonatal units. the following questions: “If I am positive for the
This process may keep babies alive only to die sev- genes, what are my options? Should I have a bilat-
eral months later or may leave them with severe eral mastectomy with reconstruction?” “Will I be
chronic disabilities. Children with chronic disabili- able to get health insurance coverage, or will the
ties require additional medical, educational, and companies consider this to be a preexisting condi-
social services. These services are expensive and tion?” “What are the future implications for my
often require families to travel long distances to daughters?”
obtain them (Urbano, 1992).
If you were the nurse, how would you address these
Genetic diagnosis and gene therapy present new
concerns?
ethical issues for nursing. Genetic diagnosis is a
Genetic engineering is the ability to change the
process that involves analyzing parents or an
genetic structure of an organism. Through this
embryo for a genetic disorder. This is usually done
process, researchers have created disease-resistant
before in vitro fertilization for couples who run a
fruits and vegetables and certain medications, such
high risk of conceiving a child with a genetic disor-
as insulin. This process theoretically allows for the
der.The embryos are tested, and only those that are
genetic alteration of embryos, eliminating genetic
free of genetic flaws are implanted.
flaws and creating healthier babies.This technology
Genetic screening is used as a tool to determine
enables researchers to make a brown-haired indi-
whether couples hold the possibility of giving birth
vidual blonde, to change brown eyes to blue, and to
to a genetically impaired infant. Testing for the
make a short person taller. Imagine being able to
most common genetic disorders has become an
“engineer” your child. Imagine, as Aldous Huxley
expected standard of practice of health-care
did in Brave New World (1932), being able to create
providers caring for women who are planning to
a society of perfect individuals: “We also predestine
become pregnant or who are pregnant. Couples are
and condition. We decant our babies as socialized
encouraged to seek out information regarding their
human beings, as Alphas or Epsilons, as future
genetic health history in order to identify the pos-
sewage workers or future . . . he was going to say
sibilities of having a child with a genetic disorder.
future World controllers but correcting himself said
If a couple has one child with a genetic disorder,
future directors of Hatcheries, instead” (p. 12).
genetic specialists test the parents or the fetus for
The ethical implications pertaining to genetic
the presence of the gene.
technology are profound. For example, some
Genetic screening leads to issues pertaining to
questions raised by the Human Genome Project
reproductive rights.It also opens new issues.What is
relate to:
a disability versus a disorder, and who decides this?
Is a disability a disease, and does it need to be cured ■ Fairness in the use of the genetic information.
or prevented? The technology is also used to deter- ■ Privacy and confidentiality of obtained genetic
mine whether individuals are predisposed to certain information.
diseases, such as breast cancer or Huntington’s ■ Genetic testing of an individual for a specific
chorea. This has created additional ethical issues condition due to family history. Should testing
regarding genetic screening. For example: be performed if no treatment is available?
Should parents have the right to have minors
Bianca, 33 years old, is diagnosed with breast cancer. tested for adult-onset diseases? Should parents
She has two daughters, ages 6 and 4 years. Bianca’s have the right to use gene therapy for genetic
mother and grandmother had breast cancer. Neither enhancement?