GENETIC DETERMINISM
The theory of genetic determinism proposes that who you are as a person is determined by
your genetics. As part of the evolutionary process humans are no more than a part of the
material universe. Everything including humanity is part of one grand chain of being
connected by cause and effect. For proponents of genetic determinism the Human Genome
Project provides the blueprint of humanity. The human self is not an “intending self,” but a
genetically pre-programmed organism. There is no human spirit or culture; humans and
human activity are the result of the natural selection process. Human morality is structured
so as to encourage reproduction and the perpetuation of genes.
What is the human Genome Project?
Completed in 2003, the Human Genome Project (HGP) was a 13-year project coordinated by the U.S.
Department of Energy and the National Institutes of Health.
Project goals were to






identify all the approximately 20,000-25,000 genes in human DNA,
determine the sequences of the 3 billion chemical base pairs that make up human DNA,
store this information in databases,
improve tools for data analysis,
transfer related technologies to the private sector, and
address the ethical, legal, and social issues (ELSI) that may arise from the project.
Though the HGP is finished, analyses of the data will continue for many years. An important feature of the
HGP project was the federal government's long-standing dedication to the transfer of technology to the
private sector. By licensing technologies to private companies and awarding grants for innovative research,
the project catalyzed the multibillion-dollar U.S. biotechnology industry and fostered the development of new
medical applications. As a result of the human genome project several philosophical questions have arisen...
1. Who should have access to stored genetic information? Who owns and controls it?
Currently in the United States, no regulations are in place for evaluating the accuracy and reliability of genetic testing.
Most genetic tests developed by laboratories are categorized as services, which the Food and Drug Administration (FDA)
does not regulate. Only a few states have established some regulatory guidelines. This lack of government oversight is
particularly troublesome in light of the fact that a handful of compnies have started marketing test kits directly to the
public. Some of these companies make dubious claims about how the kits not only test for disease but also serve as
tools for customizing medicine, vitamins, and foods to each individual's genetic makeup. Another fear is that individuals
who purchase such kits will not seek out genetic counselling to help them interpret results and make the best possible
decisions regarding their personal welfare.
Sciona's "Body Benefits" Tests
Sciona, a British company, offers a "Body Benefits" test that yields a report is based on a lifestyle questionnaire and a
DNA sample obtained by rubbing a brush swab on the inside of your cheek. The DNA sample is said to involve testing of
several genes related to free radical damage, detoxification, alcohol metabolism, and skin and hair repair. According to
Sciona they can provide you with a specialized lifestyle guide that you can use to improve your health.
The test is now available through physicians, pharmacists, and nutritionists. In 2002, the company began marketing it
through retail stores on High Street, but protests from GeneWatch UK caused the shopkeepers to stop offering it.
GeneWatch UK had three main objections:


For most people, eating a healthy, balanced diet, getting enough exercise and not smoking are much more
important in determining your health than your genes are. You can get advice on diet for free from the Food
Standards Agency and advice on quitting smoking from national helplines, or you can ask your doctor. You
should follow this advice whatever genes you have. It is particularly important that you are not misled into
thinking that your "good genes" can cope with a bad diet or with smoking or excessive drinking.
Sciona plans to keep your sample and your personal genetic information in a database (known as a "biobank")
whilst you remain a subscriber. Although Sciona has a "privacy policy" regarding your name and address, you
should remember that your personal genetic profile is unique to you and could be used to identify you, and who
is related to you, in the future. Many companies will be prepared to pay to do genetic research on your sample
and may want to claim exclusive rights to your genes by patenting them—once a gene is patented this means no
other company can sell new genetic tests or treatments using the same gene. There is growing evidence that
privatising genes in this way can stifle medical research and increase costs and many people believe it is
immoral. The law does not require Sciona to inform you if it patents or sells your genetic information.
2. Should employers be able to require job applicants to take genetic tests as a condition of
employment?
3. Should health insurance agencies be allowed to deny coverage or charge higher premiums based on
genetic predisposition to disease or habits?
On May 21st, 2008 President Bush signed into law the Genetic Information Nondiscrimination Act (GINA), which
prohibits U.S. insurance companies and employers from discriminating on the basis of information derived from genetic
tests. GINA protects Americans from discrimination based on information derived from genetic tests.



It forbids insurance companies from discriminating through reduced coverage or pricing.
It prohibits employers from making adverse employment decisions based on a person’s genetic code.
In addition, insurers and employers are not allowed under the law to request or demand a genetic test.
A 2001 study by the American Management Association showed that nearly two-thirds of major U.S. companies require
medical examinations of new hires. In addition, 14% conduct tests for susceptibility to workplace hazards, 3% for breast
and colon cancer, and 1% for sickle cell anaemia; 10% collect information about family medical history.
“Because of this legislation, Americans will be free to undergo genetic testing for diseases such as cancer, heart disease,
diabetes, and Alzheimer’s without fearing for their job or health insurance.
Increased genetic testing makes it more likely that researchers will come up with early, lifesaving therapy for a wide
range of diseases with hereditary links, lawmakers said. Genetic testing also will help doctors catch problems early,
perhaps leading to preventive treatment and lower costs.
4. How might genomic science and treatments be made available to those with fewer resources (ie.
third world countries)?
5. How might research on human genetic variation affect our concepts of race, ethnicity or culture?
DNA studies do not indicate that separate classifiable subspecies (races) exist within modern humans. While different
genes for physical traits such as skin and hair color can be identified between individuals, no consistent patterns of
genes across the human genome exist to distinguish one race from another. There also is no genetic basis for divisions of
human ethnicity. People who have lived in the same geographic region for many generations may have some alleles in
common, but no allele will be found in all members of one population and in no members of any other.
In 1996, a 3-day conference, “Plain Talk About the Human Genome Project” was held. The conference brought together
internationally recognized scientists, bioethicists, and legal scholars from government, industry, and academia to discuss
the use and misuse of genetic information. In rare "both-sides-of-the-argument" discussions, speakers expressed
apprehension about the project and the use of its resulting genetic information. Concerns ranged from the fear of
actuarial classifications of "genetic exceptionalism" to the burden African Americans would face if they were among
those labelled by some as a biological underclass. Focused particularly on how the data might affect African Americans,
the meeting also was a vehicle for students from Tuskegee and other historically black institutions to meet with genome
scientists, hear the issues, and explore career possibilities in genomics.
6. If genetic determinism is true, should the criminal justice system try to rehabilitate violent criminals?
Nathan Leopold and Richard Loeb, both 18 year-olds, were wealthy and brilliant. They had just graduated from
college when they brutally murdered a 14 year-old boy in Chicago. During college the two had been addicted to
reading crime magazines and novels. They experimented with petty theft and arson. Then together they came up
with the idea of committing the perfect crime. The challenge of planning, executing and getting away with a murder
intrigued and fascinated them. For what they later described as the “intellectual thrill” of it, they kidnapped young
Bobby Franks. They beat him on the head with a chisel, suffocated him and then phoned his wealthy parents
demanding $10,000 in ransom money. The family called the police who soon found the boy’s body half-buried
under a railway. When confronted the two quickly confessed and tried for murder, punishable by death. According
to genetic determinism could Nathan and Richard be held accountable for what they did? Do you believe humans
have the ability to choose their actions and should people be held responsible for their actions?
7. Should parents have the right to have their minor children tested for adult-onset diseases?
Some Currently Available DNA-Based Gene Tests




















Alpha-1-antitrypsin deficiency (AAT; emphysema and liver disease)
Amyotrophic lateral sclerosis (ALS; Lou Gehrig's Disease; progressive motor function loss leading to paralysis and death)
Alzheimer's disease* (APOE; late-onset variety of senile dementia)
Ataxia telangiectasia (AT; progressive brain disorder resulting in loss of muscle control and cancers)
Gaucher disease (GD; enlarged liver and spleen, bone degeneration)
Inherited breast and ovarian cancer* (BRCA 1 and 2; early-onset tumors of breasts and ovaries)
Hereditary nonpolyposis colon cancer* (CA; early-onset tumors of colon and sometimes other organs)
Central Core Disease (CCD; mild to severe muscle weakness)
Charcot-Marie-Tooth (CMT; loss of feeling in ends of limbs)
Congenital adrenal hyperplasia (CAH; hormone deficiency; ambiguous genitalia and male pseudohermaphroditism)
Cystic fibrosis (CF; disease of lung and pancreas resulting in thick mucous accumulations and chronic infections)
Duchenne muscular dystrophy/Becker muscular dystrophy (DMD; severe to mild muscle wasting, deterioration, weakness)
Dystonia (DYT; muscle rigidity, repetitive twisting movements)
Emanuel Syndrome (severe mental retardation, abnormal development of the head, heart and kidney problems)
Fanconi anemia, group C (FA; anemia, leukemia, skeletal deformities)
Factor V-Leiden (FVL; blood-clotting disorder)
Fragile X syndrome (FRAX; leading cause of inherited mental retardation)
Galactosemia (GALT; metabolic disorder affects ability to metabolize galactose)
Hemophilia A and B (HEMA and HEMB; bleeding disorders)
Hereditary Hemochromatosis (HFE; excess iron storage disorder)















Huntington's disease (HD; usually midlife onset; progressive, lethal, degenerative neurological disease)
Marfan Syndrome (FBN1; connective tissue disorder; tissues of ligaments, blood vessel walls, cartilage, heart valves and
other structures abnormally weak)
Mucopolysaccharidosis (MPS; deficiency of enzymes needed to break down long chain sugars called glycosaminoglycans;
corneal clouding, joint stiffness, heart disease, mental retardation)
Myotonic dystrophy (MD; progressive muscle weakness; most common form of adult muscular dystrophy)
Neurofibromatosis type 1 (NF1; multiple benign nervous system tumors that can be disfiguring; cancers)
Phenylketonuria (PKU; progressive mental retardation due to missing enzyme; correctable by diet)
Polycystic Kidney Disease (PKD1, PKD2; cysts in the kidneys and other organs)
Adult Polycystic Kidney Disease (APKD; kidney failure and liver disease)
Prader Willi/Angelman syndromes (PW/A; decreased motor skills, cognitive impairment, early death)
Sickle cell disease (SS; blood cell disorder; chronic pain and infections)
Spinocerebellar ataxia, type 1 (SCA1; involuntary muscle movements, reflex disorders, explosive speech)
Spinal muscular atrophy (SMA; severe, usually lethal progressive muscle-wasting disorder in children)
Tay-Sachs Disease (TS; fatal neurological disease of early childhood; seizures, paralysis)
Thalassemias (THAL; anemias - reduced red blood cell levels)
Timothy Syndrome (CACNA1C; characterized by severe cardiac arrhythmia, webbing of the fingers and toes called
syndactyly, autism)
Preimplantation genetic diagnosis (PGD) is a test that screens for genetic flaws among embryos used in in vitro
fertilization. With PGD, DNA samples from embryos created in-vitro by the combination of a mother's egg and a father's
sperm are analyzed for gene abnormalities that can cause disorders. Fertility specialists can use the results of this
analysis to select only mutation-free embryos for implantation into the mother's uterus.
Before PGD, couples at higher risks for conceiving a child with a particular disorder would have to initiate the pregnancy
and then undergo chorionic villus sampling in the first trimester or amniocentesis in the second trimester to test the
fetus for the presence of disease. If the fetus tested positive for the disorder, the couple would be faced with the
dilemma of whether or not to terminate the pregnancy. With PGD, couples are much more likely to have healthy babies;
Although PGD has been practiced for years, only a few specialized centers worldwide offer this procedure.
8. What are some of the ethical considerations for using gene therapy?

What is normal and what is a disability or disorder, and who decides?

Are disabilities diseases? Do they need to be cured or prevented?

Does searching for a cure demean the lives of individuals presently affected by disabilities?

Preliminary attempts at gene therapy are exorbitantly expensive. Who will have access to these therapies? Who
will pay for their use?
9. Where is the line between medical treatment and enhancement? Does genetic modification interfere
with the ability of the modified human being to make free choices?
The freedom argument claims that genetic modification interferes with the ability of the modified human being to make
free choices. Hans Jonas developed this argument in the early 1970s as an objection to cloning. Leon Kass, Dena Davis,
and Francis Fukuyama have developed and expanded different versions and interpretations of this argument. The
freedom argument can be understood in three different ways:
(a) Genetic modification prevents that person who has been modified from making free choices related to the modified
trait. The modifier controls the person's future by controlling his/her genes. If you have been given a gene for musical
talent, you have no choice but to become a musician. We will call this the Puppet Critique.
(b) Genetic modification limits the options of the person who is modified by limiting their range of behaviors and life
plans. A person with a gene that causes him/her to grow to a height of seven feet cannot become a jockey. We will call
this the Open Future Critique.
(c) Genetic modification interferes with the person's ability to make free choices by increasing parental expectations and
demands. A person with a gene for musical talent will face enormous pressure to become a musician. We will call this
the Parental Expectations Critique.
Genetic modification treats children as products to be designed, perfected, manipulated, and controlled. Children are no
longer viewed as gifts, but as commodities. Many have voiced the concern that various forms of assisted reproduction
can have a detrimental effect on how parents view their children. More recently, Michael Sandel has developed the
argument that genetic modification is problematic because it represents...a kind of hyperagency – a Promethean
aspiration to remake nature, including human nature, to serve our purposes and satisfy our desires. The problem is not
the drift to mechanism but the drive to mastery. And what the drive to mastery misses and may even destroy is an
appreciation of the gifted character of human powers and achievements...The problem is not that parents usurp the
autonomy of a child they design. The problem lies in the hubris of the designing parents, in their drive to master the
mystery of birth. The problem with genetic enhancement, according to this argument, is that it gives parents too much
control over the traits of their children. In another common articulation of this critique, parents and others supporting
genetic modification are accused of desiring to "play God", and of designing children to fulfil their own desires.