Justin Broyles
Apr. 12, 1995
Justice Theory
Lance Miller
Genetic engineering has developed and blossomed
at a frightening rate in the last decade.
Originating as merely an area of interest for scientists, genetic
engineering has now become an area of which all people should be somewhat
knowledgeable.
DNA profiling has many uses, both positive and
negative, in our society. Aside from its
usefulness in many legal investigations, DNA profiling can be used in the
workplace to discriminate against employees whose profiles could pose a
financial risk. For example, genetic
technology can and has been used to determine the capacity of a person to
contract certain diseases, such as sickle-cell anemia, which could cause many
employers to hesitate in the hiring and training of such people. In the early 1970's, the United States began
a carrier screening for sickle-cell anemia, which affects 1 in 400
African-Americans. Many of those
identified as carriers mistakenly thought they were afflicted with this
debilitating disease. Furthermore,
confidentiality was often breached, and in some cases, carriers were
discriminated against and denied health insurance.
Nevertheless,
genetic profiling has been beneficial in paternity suits and rape cases, where
the father or the assailant could be identified. However, despite its growing number of
utilizations, DNA profiling is extremely hazardous when results are inaccurate
or used to discriminate.
The frequency of genetic testing in criminal
investigations (more than 1,000 in the U.S. since 1987) has been increasing
dramatically despite the inconclusive testing by the scientific community in
many aspects of forensic identification.
A correlation between DNA patterns taken from a crime scene and taken
from the suspect has often been enough to charge a person with the offense in
spite of proof that some procedures for testing DNA are fallible by legal and
scientific standards.
The complexity of scientific evidence,
especially DNA profiling, has also caused many problems within the legal
profession. It is no longer enough for
attorneys or members of the jury to merely be knowledgeable about the law. People need to familiarize themselves with
today's scientific research rather than relying on the credentials of a
scientific expert witness. Too often,
jury members become in awe of the complicated, scientific terms used in court
and take a scientist's testimony as fact.
Lawyers need to increase their scientific knowledge and keep up with
ongoing research in order to competently question and understand scientific
evidence put forth.
But these do not represent the only possible
downfalls of DNA profiling in criminology.
The involuntary seizure of one's blood or hair undermines the
constitutional rights guaranteed to all citizens by the Fourth Amendment
(protection from unreasonable searches and seizures). Nevertheless, many argue that a DNA sample
taken from a suspect could lead to an indictment or release of the individual
and, thus, warrants an exception from the Fourth Amendment. Besides, one could make a plausible argument
that, once held in custody, the seizure of a person's strand of hair does not
violate a suspect's Fourth Amendment rights or rights of privacy because the
hair is visible.
However, the use of DNA profiling does not end
in criminal investigations. DNA testing
has ventured out of the courtroom in an effort to show a genetic link between
race and violent tendencies. If
successful, this link will do nothing but justify prejudice attitudes toward
minorities, particularly the black race.
Furthermore, such biological approaches towards criminality do not take
into account sociological factors, such as poverty, and would inevitably lead
to the practice of controlling minority children with the use of therapeutic
drugs or worse. For this and other reasons,
courts of all levels must implement harsher scrutiny in the area of genetic
profiling and its uses.
There is also a current effort to create a
national database of DNA, much like the existing database of fingerprints. Supposedly, the use of numerical codes will
allow huge databases to search for a match of a individual DNA band. However, these matches are not 100
percent. This inconclusive correlation
between DNA patterns has led to a heated debate which has culminated in federal
court with Daubert vs. Merrel Dow Pharmaceuticals Inc. The ruling in the Daubert case said that the
acceptance by the scientific community is not enough by itself to allow certain
scientific techniques into court as evidence, especially given the reality that
a suspects entire future could hang in the balance of a scientific finding.
Many people have argued that the use of a
national DNA database infringes on the individuals constitutional rights to
privacy. However, law officials have
claimed that the advantages this database presents for society supercede the
individual's rights. This dilemma can
easily be associated to the "social contract" presented by Thomas
Hobbes. In this contract, Hobbes
believed that each individual should give up certain individual rights in order
to achieve protection from the whole.
The forfeit of the right to privacy of one's DNA can thus be considered
one of these forfeited rights. A person
must weigh the advantages of having a past, present, or future criminal's DNA
profile on database with the disadvantages of having one's own. But the disadvantages will outweigh the
advantages when private institutions develop access to this database and use
the information for discriminatory purposes.
The impending usage of a national DNA database
poses many possible risks of political and commercial abuse of such
information, along with the danger this information falling into the hands of
unfriendly parties, are unpredictable.
Such unpredictability, certainly, is a violation of people's rights to
privacy. For instance, if a private
institution, such as a bank, an employer, or an insurance company, receives
access to this information, it could influence decisions on loans, hiring
practices, insurance rates, etc.
Society, then, is faced with a conflict between an individual's right to
privacy in one's genetic composition and the employer's or insurance company's
interest in knowing about a person's health problems. This conflict will constitute the remainder
of this paper.
Over the next ten to fifteen years, scientists
involved in the federal government's "human genome project" will try
to identify in detail each of the human cell's estimated 100,000 genes.
The knowledge derived from the project will enable physicians to detect
an increasing number of diseases and predispositions for diseases.
When Frank married at age 31, he decided to
take out a
life insurance policy. A swimmer and avid racquetball
player with no previous hospitalizations, he
felt cer-
tain his low premiums would be a worthy
investment for
his family.
Weeks later, after a routine physical exam, he
was
shocked by the insurance company's
response. Sophisti-
cated DNA testing had revealed in Frank's
tissues a sin-
gle missing copy of a so-called RB antioncogene
and minor variations in two other
genes. Computer
analysis showed
the molecular misprints more than tripled his
risk of getting small-cell lung
cancer by age 55. His application was rejected.
With the newfound ability to reveal an
individual's molecular secrets come significant new possibilities for
discrimination. The medical records of
people who apply for insurance are stored by the Medical Information Bureau, a
data bank shared by a consortium of hundreds of insurers. Ethicists warn that genetic tests could tempt
insurers to discriminate against the "healthy ill;" people who are
not yet sick but who carry genetic traits predisposing them to future illness,
such as in Frank's case. However, these
people may not be denied health insurance totally. Rather, they may be guaranteed a basic level
of treatment and rationed out of more costly procedures. For example, someone who carried the cystic
fibrosis gene, even if asymptomatic, could be denied a lung transplant. The competitive nature of the industry may
compel insurance companies to use genetic information, since the fundamental
principle of the insurance business is "pooling uncertainty." The concept of adverse selection also causes
insurers much dismay. Adverse selection
refers to the probability that people privately aware of a medical problem are
more likely to seek medical insurance.
This negates the insurers policy of setting premiums with accordance to
statistical information on the rates of illnesses and sicknesses in society. "The whole foundation of insurance is
based on the fact that we and the insurance applicant are operating with equal
levels of knowledge and ignorance."
Without this level of ignorance, insurance companies will lose their
social value as a means of spreading risk across groups of people.
Genetic engineering with respect to insurance
does not stop here. Further development
could lead to a complete knowledge of who will develop a disease and when. This will drastically effect the practicality
of life insurance policies. "I can
see 20 or 30 years from now that life insurance policies will be essentially
accident policies, because everything else will be foreseeable. The essence of insurance is you assess a risk
against the unknown; if there's no medical unknown, the only unknown is whether
you're going to get hit by a bus."
Another striking danger of insurance companies
discriminating with respect to a person's DNA profile is with infants. The companies may become extremely hesitant
in insuring babies who have a high susceptibility to certain diseases. In fact there have been some cases where the
insurers actually demanded the parents to abort the fetus or risk losing
insurance. This obviously constitutes a blatant
violation of people's rights. Plus, it
dangerously causes the insurance companies to begin to play the role of God,
that is, in deciding who should live and who should not. "By agreeing to pay for some infants and
not for others, insurance companies could inadvertently practice a form of
economic eugenics, based not on grand designs for a superrace but on who
requires the least expensive medical care." Perhaps, some form of national health
insurance is the only remedy for these problems. "Genetic testing may provide the best
reason yet for a nationalized health-care policy."
But insurance companies are not the only
private entities with the potential to discriminate against people with
unfavorable genetic profiles. Employers,
too, have a substantial financial risk in hiring an employee with an above
average propensity for illness or early death.
Ellen spent four years completing her PhD in
industrial
and chemical engineering. Now, wincing as a company
doctor drew a few drops of blood for her
preemployment
physical, she could hardly contain her
excitement about
the job she'd been offered at one of the
country's fore-
most metallurgical research institutes.
Two days later the phone call came. You are perfectly
healthy, the young doctor said. But tests have revealed
you harbor a gene that can result in decreased
levels of
a blood enzyme, glucose-6-phosphate
dehydrogenase. With-
out the enzyme's protection, you have a
slightly increased
risk of developing a red blood cell disease if
you come
into contact with certain chemicals in our
laboratory.
I'm sorry, he said. The job has been offered to someone
else.
As Ellen's case shows, the danger of
discrimination certainly does not end with health insurance. There is also a grave danger of
discriminatory hiring practices in the workplace. In 1989, Jonathan Beckwith, a geneticist at
Harvard, and Dr. Paul Billings, director of the division of genetic medicine at
Pacific Presbyterian Hospital in San Francisco, completed a small-scale study
of genetic discrimination. Of 55
responses, Billings and Beckwith could document 29 people who reported multiple
instances of discrimination by adoption agencies, employers and insurers.
And the
percentages will only get worse as more and more companies implement genetic
screening policies. In a survey of 400
U.S. firms conducted in 1990, 15 percent of companies responded that by the
year 2000, they planned to check the health status of not only their prospective
employees, but their dependents as well before making a job offer. These statistics show all too well the
impending problem with genetic discrimination in the workplace.
Employers will have a number of potential
justifications for genetic testing in the workplace. In some cases, there may be an argument in
favor of testing for public health reasons.
Fortunately, judges and juries have predicted these justifications and
have began to make the necessary rulings to ensure true justification for discrimination. The relevant judicial opinions indicate that
there will have to be a significant or reasonable likelihood of harm to others
from having the individual employed.
Hopefully, rulings such as these will serve their purpose in protecting
the right of all citizens.
With the balance of interests laid out
(individuals concerned about confidentiality and discrimination, and insurers
and employers concerned about adverse selection and fiscal liability), it will
fall upon legislators and the courts to define the proper use of genetic information. Policy makers will have to confront an
apparent discrepancy between the reality of genetic variability and the
democratic ideal that all citizens are "created equal." The information itself is not the
problem. What matters is how the
knowledge is
used. Scientific advancements are not to
blame. "What science does is give
society opportunities. What we have to
do is look at these opportunities and then set up the constraints and the rules
that will allow society to benefit in appropriate ways." Without the proper constraints, the price of
glimpsing one's medical future is high indeed.
DNA profiling can be an extremely beneficial
tool in the war against crime. However,
when used for discriminatory purposes, this tool becomes a crime in
itself. The ability to compare and
contrast a person's genetic code with another should not be taken lightly, for
with this great knowledge comes great responsibility. If not used wisely, this ability of the
few... will develop into a disability for the many.
ENDNOTES
L.R.,
"One Worked; The Other Didn't," Science 5 Jan.
1990: 18.
William
C. Thompson, "DNA Evidence in Criminal Law:
New
Developments," Trial August 1994:
37.
Thomas
J. Mack, "Scientific Testimony After Daubert:
Some Early
Returns from Lower Courts," Trial August 1994: 25.
Thompson: 42.
Roger
Lewin, "Limits to DNA Fingerprinting," Research
News 24 Mar.
1989: 1550.
Mack: 39.
Thompson: 47.
Thompson: 45.
Thomas
Hobbes, "The Case Against Anarchy," 1651: 158.
Council on Ethical and Judicial Affairs, AMA, "Use of Genetic
Testing by Employers," JAMA 2 Oct. 1991:
1827.
Rick
Weiss, "Predisposition and Prejudice," Science
News 21 Jan.
1989: 40.
Shannon Browniee, "The Assurances of Genes," U.S. News
& World
Report 23 Jul. 1990: 59.
Browniee: 57.
Renee
Twombly, "The Wider Implications," Patient Care
15 Sep.
1994: 20.
Browniee: 57.
Browniee: 57.
Weiss: 42.
Browniee: 58.
Browniee: 59.
Weiss: 40.
Browniee: 57.
Browniee: 58.
JAMA 2
Oct. 1991: 1827.
David
Orentlicher, MD, "Genetic Screening by Employers,"
JAMA 16 Feb.
1990: 1008.
Weiss: 40.
Weiss: 42.
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