"The resulting milieu of technological triumphalism appears to offer
omniscience -- capabilities of enhanced surveillance and control over
people and events, as well as promises of perfectionism (thus leading to
both a loss of privacy and increased opportunities for discrimination by
powerful entities). Predictability will replace a tolerance for natural
variation and diversity. Powerful scientists have already called for
programs of eugenics, labeled as "genetic enhancement" to create a less
distasteful package."3  


Note: Slightly dated article but the ethical concerns are the same.

August 2000
Does Genetic Research Threaten Our Civil Liberties?
By  Philip Bereano 

     The Human Gene Project at the National Institutes of
Health, also being supported in universities all across America, will
one day in the not-too-distant future enable every set of parents that
has a little baby to get a map of the genetic structure of their child.
So if their child has a predisposition to a certain kind of illness or a
certain kind of problem, or even to heart disease or stroke in the early
40's, they will be able to plan that child's life, that child's
upbringing, to minimize the possibility of the child developing that
illness or that predisposition, to organize the diet plan, the exercise
plan, the medical treatment that would enable untold numbers of people
to have far more full lives than would have been the case before…1 
                                                  
President Bill Clinton  
   
The goal of The Human Genome Project is to identify every human gene.
 
  
Genes have become a business commodity.
However, the confluence of a number of technical and social trends has
greatly enhanced the capacity for using genetic techniques for
surveillance and tracking: 
The science of genetics is a flourishing new industry, nourished in
large part by the federally funded Human Genome Project. The goal of
this ambitious research endeavor is to identify every gene found in the
human body, perhaps 100,000 in all. Several months ago, the US
government and a private corporation announced that they had "completed"
the "map" of the genome, although actually there are still many gaps.
Much related research focuses on genetic diagnostics -- tests designed
to identify genes thought to be associated with various medical
conditions. More than 50 new genetic tests have been identified in the
past five years alone. 

The increasing speed, sophistication, affordability, and
interconnectivity of computer systems allows the rapid monitoring and
matching of many millions of records. A 1994 benchmark study by the ACLU
found that "concerns about personal privacy run deep among the American
people."2

The promotion of an ideology of geneticization fosters the belief that
genes are determinative of an individual's behavior, character, and
future. 

Capitalist economic relations have created a scramble for venture
capital, the altering of patent laws, and calls for mass genetic testing
by researchers who trade on the old image of the altruistic scientist to
mask their conflicts of interest in testing labs, patents, consulting
contracts, etc. 

New technology does not benefit everyone equally.Our technological
society
Technologies are not value-neutral; they usually embody the
perspectives, purposes, and political objectives of powerful social
groups. The dominant ideology in Western society proclaims that science
and technology are value-neutral, and the only problems caused by
technologies are either "externalities" (unintended side effects) or
abuses. However, because technologies are the result of human
interventions into the otherwise natural progression of activities (and
not acts of God or of nature), they are themselves actually imbued with
human intentions and purposes. Current technologies do not equally
benefit all segments of society (and indeed are not intended to do so),
although to maximize public support for these developments and to
minimize potential opposition, their proponents rarely acknowledge these
distributional ramifications. 
Because it needs large capital, new technology is influenced by the rich
and powerful.

The United States is a society in which the differential access to
wealth and power has been exacerbated during recent years. Thus, those
people with more power can determine the kinds of technological
developments that are researched and implemented. Because of their size,
scale, and requirements for capital investments and for knowledge,
modern technologies are powerful interventions into the natural order.
They tend to be the mechanisms by which already powerful groups extend,
manifest, and further consolidate their powers. Thus, technologies
themselves are not neutral; they are social and political phenomena.
Genetic technologies and computerization exhibit these characteristics,
and reflect power differentials in our society. Genetic enhancement of
individuals or races (eugenics) is possible.

The resulting milieu of technological triumphalism appears to offer
omniscience -- capabilities of enhanced surveillance and control over
people and events, as well as promises of perfectionism (thus leading to
both a loss of privacy and increased opportunities for discrimination by
powerful entities). Predictability will replace a tolerance for natural
variation and diversity. Powerful scientists have already called for
programs of eugenics, labeled as "genetic enhancement" to create a less
distasteful package.3  

Genetic privacy is as real a concern as medical privacy.
Loss of privacy

Genetic privacy, like medical privacy in general, involves notions of
the dignity and integrity of the individual. Is data accurate; can
individuals access their own files; can the donor correct inaccurate
data; are the custodians faithful and are technical security systems
protecting the data where possible; does the individual have control
over which third parties are allowed access, and under what conditions?

The US Department of Defense will not bar third-party use of employee
DNA samples.
FBI criminal data includes DNA collected from the convicted as well as
the accused.
Infant blood tests are stored in databases.
The US Department of Defense insists on taking DNA samples from all its
personnel, ostensibly for identification of those killed in action and
body parts from military accidents -- despite the fact that the samples
are to be kept for 50 years (long after people have left active duty),
the program includes civilian employees, the agency refuses to issue
regulations barring all third party use, and the Department will not
accept waivers from the next of kin of subjects not wanting to donate
tissues. 

The FBI has been promoting the genetic screening of criminals to
establish state DNA identification data banks to be used in criminal
investigations; indeed, Federal legislation penalizes states fiscally if
they don't participate, and now all do. Yet the data includes samples
from those whose crimes have low recidivism rates or don't leave tissue
samples; in some states people merely accused are forced into the
program, and in others there are politicians calling for an expansion
along these lines, despite the Constitutional presumption of
innocence. 

Infant blood samples, from the heel-sticks used to determine blood type
and test for PKU, are stored as "Guthrie blots." California alone has
more than seven million in its repository. 
An individual's rights should include informed consent to genetic
screening. 
 
 The American Civil Liberties Union advocates that "the decision to
undergo genetic screening is purely personal" and it should not be
"subject to control or compulsion by third parties" or the government.
And "where a person has intentionally undergone genetic screening
procedures there must be no disclosure of findings to third parties
without the express and informed consent of the subject given after the
results of the screening are made known to the subject and upon such
times and conditions as the subject may require…"4 

Yet patients' records "are commodities for sale," in the words of the
New York Times a few years ago,5 and a panel of the US National Research
Council has warned that the computerized medical records of millions of
citizens are open to misuse and abuse.6 People have been denied health
insurance because of genetic screening. 
 
 
Genetic discrimination

Genetic discrimination is the other major civil liberty threatened by
genetics research. Scientists working with the Council for Responsible
Genetics have documented hundreds of cases where healthy people have
been denied insurance or employment based on genetic "predictions."7 Of
course, relatively few genetic diseases are deterministic; most tests
(which have inherent limits themselves) cannot tell us if a genetic
mutation will become manifest; if it does do so, it cannot tell us when
in life this will occur; and if it happens, how severe the condition
will be. In addition, many genetic conditions can be controlled or
treated by interventions and environmental changes; that is why
governments mandate testing newborns for PKU.

The growth of the mania for testing in the US is a manifestation of
class relationships, through new technological possibilities: employers
test employees, insurance companies and health organizations test
patients, college officials test students, legislators pass bills to
test a variety of disempowered groups (welfare recipients, prisoners,
immigrants and the like). Such indignities are never foisted upon the
ruling class by the masses.  

An HMO stated it would pay for an abortion of a fetus carrying a genetic
disorder, but not provide coverage if born. 
 
Healthy people were denied coverage despite their disease prevention
measures.
 
 Examples of such discrimination include: 
A pregnant woman, whose fetus tested positive for cystic fibrosis, was
told by her health maintenance organization (HMO) that it would be
willing to cover the cost of an abortion but would not cover the infant
under the family's medical policy if she elected to carry the pregnancy
to term. 

A healthy woman, who casually mentioned to her family doctor that her
father had been diagnosed with Huntington's disease, and that she
herself was at risk for inheriting this genetic disorder, was later
denied disability insurance. The insurance company rejected her because
they found a note about her father's diagnosis written in the margin of
her medical records. 
A healthy boy, who carried a gene predisposing him to a heart disorder,
was denied health coverage by his parents' insurance company, even
though the boy took medication that eliminated his risk of heart
disease. 

One healthy man in his 20s with a gene for the degenerative brain
condition Huntington's disease was refused life insurance. His older
brother, on the other hand, tested negative and was able to reduce his
premium which had been previously set on a family history of the
disease. 

Another case involved a well woman in her 30s whose genetic test
indicated a 70 to 90 per cent risk of developing cancer. Despite having
regular screening for cancer, her superannuation was reduced and the
life cover component refused. 
Insurance companies in many states can charge higher health
premiums. 
  
 Federal legislation, the Health Insurance Portability and
Accountability Act (HIPPA, 1996), limits genetic discrimination as a
basis for denying certain insurance medical insurance policies, but it
does not prohibit charging higher premiums, nor does it cover life,
disability, or automobile insurance or to employment -- all areas of
documented discrimination. Slowly, state by state, the CRG, ACLU, and
patients' rights groups are trying to get legislation passed to reduce
or eliminate genetic discrimination; about 40 states have enacted some
type of protections, but many are very weak and/or partial.

Federal rules for medical privacy (including genetic information) under
HIPPA were announced in August 2000, after weaker proposals by the
Clinton Administration received a great deal of criticism. While
providing standards for the disclosure of bio-information, the rules
require that the patient only receive notice, not give consent; thus,
there still would not be full patient control over sensitive
information.

The President has also announced his support of a Federal bill which
would prohibit health insurance providers from using any type of genetic
information for making decisions about whether to cover a person or what
premium to charge. This legislation would address some of the
discrimination problems which have been occurring. (that never occured)
And he has issued an Executive Order barring genetic discrimination in
Federal employment.   
Our fate is not determined solely by genes; environmental factors play a
role, too.

Conclusion

Beyond the risks of discrimination and loss of privacy, however,
society's fascination with genetic determinism has other social and
political consequences. An overemphasis on the role of genes in human
health neglects environmental and social factors, thus contributing to
the image of people with "defective" genes as "damaged
goods." This, in
effect, encourages a "blame the victim" mindset, directly contrary to
the public policy embodied in the Americans with Disabilities Act, now
10 years old. Economic and social resources end up being diverted into
finding biomedical "solutions" while societal measures get
short-changed. Conclusion: The politics of genetic technologies must be
monitored.

Although new technologies claim to offer us more "freedom," they really
can threaten our civic values. This is certainly true of the new
biology. As Jefferson warned, "the price of liberty is eternal
vigilance" -- it isn't genetically hard-wired to happen automatically. 

© 2000, American Institute of Biological Sciences. Educators have
permission to reprint articles for classroom use; other users, please
contact editor for reprint permission. See reprint policy.  
About the author: Philip L. Bereano, Ph.D., J.D., is a professor in the
College of Engineering, Department of Technical Communication,
University of Washington, Seattle. For over 30 years he has worked on
issues regarding technologies and public policies. He chairs the
national Committee on Databases and Civil Liberties of the American
Civil Liberties Union, and is a co-founder of the Council for
Responsible Genetics. He participated in the development of the UN
Cartagena Biosafety protocol. 
http://www.uwtc.washington.edu/people/faculty/bereano
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