chapter 4 | Questions of Values and Ethics 53recovery is expected. In situations in which little or
no improvement is expected, the issue of whether
the good outweighs the bad prevails. Suffering
induced by technology may include physical, spiri-
tual, and emotional components for the patient and
the families.
Today, many infants who have low birth weight
or birth defects, who not so long ago would have
been considered unable to live, are maintained on
machines in highly sophisticated neonatal units.
This process may keep babies alive only to die sev-
eral months later or may leave them with severe
chronic disabilities. Children with chronic disabili-
ties require additional medical, educational, and
social services. These services are expensive and
often require families to travel long distances to
obtain them (Urbano, 1992).
Genetic diagnosis and gene therapy present new
ethical issues for nursing.Genetic diagnosisis a
process that involves analyzing parents or an
embryo for a genetic disorder. This is usually done
before in vitro fertilization for couples who run a
high risk of conceiving a child with a genetic disor-
der. The embryos are tested, and only those that are
free of genetic flaws are implanted.
Genetic screeningis used as a tool to determine
whether couples hold the possibility of giving birth
to a genetically impaired infant. Testing for the
most common genetic disorders has become an
expected standard of practice of health-care
providers caring for women who are planning to
become pregnant or who are pregnant. Couples are
encouraged to seek out information regarding their
genetic health history in order to identify the pos-
sibilities of having a child with a genetic disorder.
If a couple has one child with a genetic disorder,
genetic specialists test the parents or the fetus for
the presence of the gene.
Genetic screening leads to issues pertaining to
reproductive rights. It also opens new issues. What is
a disability versus a disorder, and who decides this?
Is a disability a disease, and does it need to be cured
or prevented? The technology is also used to deter-
mine whether individuals are predisposed to certain
diseases, such as breast cancer or Huntington’s
chorea. This has created additional ethical issues
regarding genetic screening. For example:
Bianca, 33 years old, is diagnosed with breast cancer.
She has two daughters, ages 6 and 4 years. Bianca’s
mother and grandmother had breast cancer. Neithersurvived more than 5 years post treatment. Bianca
undergoes a lumpectomy followed by radiation and
chemotherapy. Her cancer is found to be nonhormon-
ally-dependent. Due to her age and family history,
Bianca’s oncologist recommends that she see a geneti-
cist and have genetic testing for the BRCA-1
and BRCA-2genes. Bianca makes an appointment
to discuss the testing. She meets with the nurse who
has additional education in genetics and discusses
the following questions: “If I am positive for the
genes, what are my options? Should I have a bilat-
eral mastectomy with reconstruction?” “Will I be
able to get health insurance coverage, or will the
companies consider this to be a preexisting condi-
tion?” “What are the future implications for my
daughters?”
If you were the nurse, how would you address these
concerns?
Genetic engineeringis the ability to change the
genetic structure of an organism. Through this
process, researchers have created disease-resistant
fruits and vegetables and certain medications, such
as insulin. This process theoretically allows for the
genetic alteration of embryos, eliminating genetic
flaws and creating healthier babies. This technology
enables researchers to make a brown-haired indi-
vidual blonde, to change brown eyes to blue, and to
make a short person taller. Imagine being able to
“engineer” your child. Imagine, as Aldous Huxley
did in Brave New World(1932), being able to create
a society of perfect individuals: “We also predestine
and condition. We decant our babies as socialized
human beings, as Alphas or Epsilons, as future
sewage workers or future... he was going to say
future World controllers but correcting himself said
future directors of Hatcheries, instead” (p. 12).
The ethical implications pertaining to genetic
technology are profound. For example, some
questions raised by the Human Genome Project
relate to:
■Fairness in the use of the genetic information.
■Privacy and confidentiality of obtained genetic
information.
■Genetic testing of an individual for a specific
condition due to family history. Should testing
be performed if no treatment is available?
Should parents have the right to have minors
tested for adult-onset diseases? Should parents
have the right to use gene therapy for genetic
enhancement?