Ali Maniace

Genetic Testing Article Summary Article title: When What We Know Outstrips What We Can Do
10/19/14

Margaret R. McLeans genetic testing article describes the conflicts families affected by
genetically transmitted diseases face when considering testing to reveal their genetic code and that of
their descendants. Using Huntingtons disease as an example, When What We Know Outstrips What
We Can Do discusses the options prospective parents, with a history of a genetic disease, have in
diagnosing and mediating a potential genetic disorder. Ethical questions and various views about the
future of genetic diseases are also included. The article gives the reader a complete and thorough
understanding of the spectrum of issues involved with genetic testing.
Since 1990, when the Human Genome Project (HGP) enabled scientists to decode our DNA,
genetic information has become available. Huntingtons disease is one of the approximately 4,000
genetic diseases that can be tested for and diagnosed before symptoms begin. The gene for
Huntingtons disease is dominant, so only one copy of the gene from either parent will cause the disease
in their offspring, giving their children a 50% chance of inheriting the disease. For families with a history
of Huntingtons, deciding whether to have children can be a difficult choice. Many prospective parents
with a family history of Huntingtons are in favor of testing. They do not want to have a child who has a
chance of developing the symptoms of Huntingtons: shifts in personality, depression, loss of
coordination, and dementia, which typically begin when the victim is around 30 to 50 years old. Others
argue against testing. One will be constantly living in fear of the onset of symptoms and early death

after having the screening. If a child is tested for the disease, the parent will also know if they will
develop the symptoms later in life.
A cure for genetic diseases has not been developed yet, though currently, the concept of precise
molecular correction, where the diseased DNA is replaced with its healthy counterpart, is being pursued.
Genetic diseases are the fourth highest cause of death in the United States, and the ability to identify
and cure them will be significant scientific milestones. Genetic testing is the first step to curing these
devastating diseases. Yet, many believe that screening for the diseases is not helpful if there is no cure
and that diagnosis would simply cause emotional pain. Knowledge of a genetic disease can cause one to
lose insurance coverage or employment, as well as dramatically altering ones outlook on life. As Alice
Wexler says in her book Mapping Fate, Living at risk undermines confidence, for there is no way of
separating the ordinary difficulties and setbacks of life from the early symptoms of the illness.
[Huntingtons disease] is not like any other physical illness, where consciousness can at least continue
on in the knowledge that one is still oneself, despite severe pain and physical limitation. Huntingtons
means a loss of identity.
The choice to have a child with the knowledge that he may have Huntingtons disease is very
difficult for families. Yet, options are available to families planning to have children, despite the history
of Huntingtons in their family. In virto fertilization and preimplantation genetic diagnosis are
possibilities to ensure that genetic diseases no longer continue throughout the family. The egg is
fertilized outside of the womb, and once it becomes eight cells, it is tested for the disease. The embryos
free of the disease are then transferred to the mother so there is no chance of having a child born with
the disease. Despite its potential, the procedure costs about $10,000, and is rarely paid by insurance.
Embryonic cell cloning may be the key to creating embryos with no genetic disease. The copied embryos
DNA will be modified, allowing a disease-free child to be created. This successful method of treatment

also poses many ethical questions. The line between preventing disease and enhancing a human is very
blurry. The therapeutic genetic modification is only correcting a disease found within the childs genes,
while the eugenic changes the features of a person. Prejudice comes into play when altering the key
characteristics of a person. As Margaret R. McLean states, Is the purpose of the intervention to bring a
person to a state of health or to go beyond health in the design of someone new or better?
Looking to the future, the genetic information discovered by tests needs to be carefully
monitored, and there are many questions to consider which the article touches upon. How will this
information affect the way someone is treated by others and the outer community? Will there still be
confidentiality? Will there still be personal choice? How will this testing be paid for; will health insurance
cover the cost, and if not, will genetic testing be available only to the affluent? When is it ethical to
consider genetic intervention? Perhaps most importantly, how will genetic testing shape our future as a
society? Will we engineer our children to possess the characteristics we prize?
New technology has enabled scientists to understand each of our genetic material. This
advancement offers a revolutionary opportunity to regulate and potentially abort genetic disease. Yet,
at what cost to our society? As scientists learn more from genetic decoding and are eventually able to go
beyond diagnosis and cure such disorders, a number of moral issues will have to be resolved. The future
of generations to come lies with the ethical considerations of therapeutic and eugenic genetic
intervention. Will we be able to discern the fine line between right and wrong, and use this new
technology in a responsible manner?