genes & ethics

Joseph Carson (73530.2350@CompuServe.COM)
18 Jul 97 15:23:12 EDT

Dear Colleagues in ASA,

I'm now the Chair of the Ethics and Professionalism Committee of the
Technology & Society Technical Division (6000 members) of the 125,000 member
American Society of Mechanical Engineers (ASME). The 350,000 member
Institute for Electrical and Electronic Engineers (IEEE) is the only other
Engineering Professional Society that has a similar Technical Division, it's
named Society for Social Implications of Technology (SSIT). SSIT sponsors a
discussion list similar to ASA's, and this post caught my attention for its
relevancy to ASA's Mission. ASME's website is; IEEE's is

Joe Carson

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Sb: Op Ed--Genetics & Civil Liberties
Fm: Phil Bereano >

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Below is the text of my Op Ed "Don't Take Liberties with our Genes" which
was published in the Seattle Times on Thursday July 17. (My apologies if
you receive this on more than one list.)


Don't Take Liberties with our Genes

"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. . . ."

Bill Clinton's picture of a wonderful technofuture sounds like a
threatening Brave New World to many Americans. The confluence of a number
of technical and social trends has greatly enhanced the capacity for
genetic 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, approximately 100,000 in all. Much of the 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.
* The promotion of an ideology of geneticization fosters the belief
that genes are determinative of an individual's behavior, character, and
future. In the words of Nobelist Jim Watson, "We used to believe our
destiny was in the stars; now we know it is in our genes." (The critical
role of environment, and the complex interplay between a genome and its
surroundings, is largely ignored in the media and public discourse about
* Capitalist economic relations have created a mad 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.

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, they are themselves actually
*imbued with 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.

The United States is a society in which the differential access to
wealth and power has been exacerbated during recent years. Because
technologies are intentional interventions into the environment, 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.

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. Predictability will
replace a tolerance for natural variation and diversity. Leading scientists
have already called for programs of eugenics, labelled as "genetic
enhancement" to create a less distasteful package.

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. For example:

* 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
* 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
* 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.
* 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; recent Federal legislation penalizes states fiscally if
they don't participate. 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.
* 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.

The American Civil Liberties Union advocates that "the decision to
undergo genetic screening is purely personal;" 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 . . . ."

Yet patients' records "are commodities for sale," in the words of
the New York Times and a panel of the US National Research Council warned
this March that the computerized medical records of millions of citizens
are open to misuse and abuse.

A 1994 benchmark study by the ACLU found that "concerns about
personal privacy run deep among the American people." Genetic privacy, like
medical privacy in general, involves notions of the dignity and integrity
of the individual. In addition to some of the aspects already noted (is
data accurate; can the individual 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 key problem concerns the "front end" collection of the
data itself.

Data should only be collected voluntarily, using modern notions of
informed consent. Mandatory testing, testing coerced by the conditioning of
benefits or employment, surreptitious testing--all violate privacy notions.
The scope of the informed consent should define future allowable uses of
the samples. In particular, there should not be any general exemption for
future unconsented research uses--one's integrity is not any less
compromised because a third party is wearing a lab coat. (If the argument
is made that this may compromise the ability to do research, we should
remember that upholding civil liberties values often leads to
inefficiencies; we certainly could catch more crooks if we did away with
the Fourth Amendment prohibition on warrantless searches.)

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." 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, 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.

Recent Federal legislation, the Kennedy-Kassebaum bill, limits
genetic discrimination regarding certain insurance medical insurance
policies, but does not apply to others, nor to 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 fifteen states have enacted some type of protections.

On Monday, President Clinton announced his support of a Federal
bill which would prohibit health insurance providers from using any types
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.

Beyond the risk of discrimination, 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. For example, strong evidence points to links between
environmental contamination and cancer. Current research priorities,
however, are skewed toward identifying genetic predispositions to cancer.
If cancer is cast primarily as a genetic disease, then legislators may
discard efforts to clean up environmental carcinogens in favor of a search
for "cancer genes."

In effect, we encourage a "blame the victim" mindset, where we
condemn people with "faulty" genes. Social conditions such as poverty or
environmental pollution, which correlate directly with poor health and
higher mortality rates, become less important. And economic and social
resources end up being diverted into finding biomedical "solutions" while
societal measures get short-changed.

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.

Philip L. Bereano
Department of Technical Communication
University of Washington
14 Loew Hall, Box 352195
Seattle, WA 98195-2195

ph: (206) 543-9037
fx: (206) 543-8858