What now? The short answer is nobody knows. The
world will not discover
the latest human genetic trends in books like this one, but rather
in the morning paper and on the evening news. Almost as soon as any
author's page is typed, genetic advances redefine the realities, the
language
and the timelines. By creep and by leap, the world will be
alternately
shocked and lulled-and then shocked again-to learn how rapidly
humanity and nature are changing.
Today's headline is tomorrow's footnote. In 1978, Louise Brown
became the world's first test-tube baby and a braver new world
shuddered.
Since then, in vitro fertilization has become common reproductive
therapy.
In 1997, Dolly the cloned Scottish sheep captured cover stories and
stirred
acrimonious debate across the world. Shortly after that, several
cows were
cloned in]apan, but the news merely flashed across CNN as a fleeting
text
report behind the comical headline "Udderly Amazing." In 1998, the
Chinese government launched a program to clone its pandas. Shortly
thereafter, Spanish authorities approved cloning of a bucardo, a
recently
extinct mountain goat. In 2000, Virginia scientists cloned five
pigs. Entire
menageries are in various stages of being cloned, from monkeys to
mastodons to family pets.l
Human clones are next. In late 2001, when editors were discussing
this
book, the experts insisted we were decades away from the first human
clone. As chapters were being submitted, the prediction of "decades"
shortened
to "years." By the end of 2002, those same experts were debating
whether any of several competing scientists had already successfully
created
the first cloned babies. There is no shortage of willing donors or
parents,
nor rumors to supply the field. Legislation enacted in several
countries cannot address the international dimensions of the where,
who
and how of impregnation, gestation and conception itself.2
Predictions and timelines are little more than well-intentioned
selfdelusion.
However, this much is certain: a precocious new genetic age has
arrived. This genetic age, morphing at high velocity, can barely be
comprehended
by a world that doesn't even speak the language of genetic
engineering.
Certainly, the latest developments continuously flood a spectrum
of scientific journals and symposia, prominent and obscure. Yet few
can
keep up with the moral, legal and technological implications,
especially
since much of the information is so technical.
At the same time, the consequences of genetic advance are obscured
by
hype and conspiratorial clamors. Adding more fog, human genetics is
now
in many ways dominated by capital investment, and many revelations
are
subject to the eighteen-month initial secrecy of patent
applications, the
protracted strictures of Wall Street financing and the permanence of
corporate
nondisclosure agreements. Many areas of human science are now
trade secrets. Twentieth-century corporate philanthropy has given
way to
twenty-first-century corporate profits. Information is often
controlled by
public relations officers and patent attorneys. It takes a
profoundly trained
professional eye and a clear mind to separate fact from fantasy and
blessings
from menaces.
No one should fear the benefits of human reengineering that can
obliterate
terrible diseases, such as cystic fibrosis and Tay-Sachs. The list
is long
and genetic researchers are constantly laboring toward the next
breakthrough.
Every such medical advance is a long overdue miracle. Society
should welcome corrective genetic therapies and improvements that
will
enhance life and better mankind.
Yet humanity should also be wary of a world where people are once
again defined and divided by their genetic identities. If that
happens, science-
based discrimination and the desire for a master race may resurrect.
This time it would be different. In the twenty-first century it will
not be race, religion or nationality, but economics that determines
which among us will dominate and thrive. Globalization and market
forces will replace racist ideology and group prejudice to fashion
mankind's
coming genetic class destiny. If there is a new war against the weak
it will not be about color, but about money. National emblems would
bow to corporate logos.
Newgenics may rise like a phoenix from the ashes of eugenics and
continue
along the same route blazed in the last century. If it does, few
will be
able to clearly track the implications because the social and
scientific revolutions
will develop globally and corporately at the speed of a digital
signal.
The process will manifest as gradual genetics-based economic
disenfranchisement.
First, newgenics will create an uninsurable, unemployable and
unfinanceable genetic underclass.
The process has already started.
Like eugenics, newgenics would begin by establishing genetic
identity,
which is already becoming a factor in society, much like ethnic
identity
and credit identity. DNA identity databanks are rapidly
proliferating. The
largest group of databanks warehouse the genetic identities of
criminals,
suspects, arrestees and unidentified individuals whose DNA is found
at
crime scenes. The Federal Bureau of Investigation's Combined
National
DNA Index System (COOlS) was inaugurated in 1990 and has been
steadily data basing DNA from criminal encounters. All fifty states
have
now passed laws creating state databanks that feed COOlS using the
FBI's
software. By March of 2003, these state databanks were just becoming
operational, but legal reviewers have already pointed out the
state-to-state
inconsistencies in collection and dissemination standards, as well
as storage
protocols. The FBI's databank, which in March of 2003 maintained
more than 1.5 million profiles, is growing by some 100,000 profiles
a
month, and the Department of Justice has asked the FBI to prepare
for up
to fifty million.3
England's rapidly expanding National DNA Database is expected to
hold DNA "prints" on three million individuals by 2004. Canada's
newlycreated
databank stored some 23,000 samples as of March 2003, and adds
more than a thousand profiles a month. Canada is also pioneering
total
robotic management and retrieval. China is building extensive
databanks,
employing more than a hundred DNA laboratories to process the
samples.
By March of 2003, national DNA databases had become active in
Austria,
Holland, Germany, Australia and many other countries. Local DNA
dragnets
in Germany, England, Australia and the United States have been
launched by police to snare offenders who would otherwise never be
identified.
Such dragnets, which typically ask every citizen of a certain
profile or
geographical area to provide a DNA sample, are becoming more
common.4
Police DNA databanks are a powerful and needed tool to help thwart
crime and terrorism. They have not only trapped many criminals, they
have also prompted the release of many wrongfully arrested or
convicted. A
number of death row inmates and long-term convicts have been freed
only
because of DNA analysis of previously untested evidence. Moreover,
help
ful medical information on individuals is already being discerned
from
police DNA "fingerprints." For example, British police DNA
specialists
have concluded that one of the ten DNA markers they analyze for
criminal
identification also carries information about diabetes. Information
about
various types of cancer has been derived from DNA fingerprints as
well. 5
The network of DNA databases will soon be global. Interpol conducts
a
regular International DNA Users Conference to proliferate and link
police
DNA databank systems worldwide. Soon every nation from Argentina to
Zambia, and every local jurisdiction in between, will be able to tap
into the
international genetic network.6
While police DNA databanks are a necessity, they carry twenty-firstcentury
problems. Each country will develop its own rules and regulations
about storage, handling and access. There is as yet no body with the
authority to set global standards for collection, maintenance or
dissemination
of DNA data. Quickly, society has learned that crime fighting is no
longer the only reason to collect and organize D A fingerprints.
Identification itself is a compelling issue. Military organizations
now
record DNA fingerprints of their soldiers. America's Armed Forces
Repository of Specimen Samples, located in a facility outside
Washington,
maintains hundreds of thousands of profiles. The tomb of the unknown
soldier will soon be a thing of the past.7
States are discussing local genetic identification banks for
ordinary citizens
as well. Connecticut's Department of Social Services already
operates
a special Biometric ID Project that stores digital fingerprints of
its welfare
recipients to combat widespread interstate welfare fraud. The
Connecticut
program currently only records digital scans of traditional
fingerprints, but
the agency has publicly indicated that stored biometric data could
also
include retinal scans and facial imaging.s Eventually, each state
will probably
develop its own biometric methodology, which would almost certainly
include genetic identification. Such systems would ultimately
proliferate
down to the county and municipal levels, creating a diverse
interoperable
national network.
The events of September 11 only accelerated fascination with genetic
identification. The technique is now widely studied as a weapon in
the war
against global terrorism. Think tanks have discussed a wide range of
biometric
recognition systems and smart cards to secure our society. Biometric
databanks-to include DNA fingerprints-have been proposed for
airports,
immigration bureaus, customs stations, passport offices and even
university programs for foreign students. Such systems would be
deployed
worldwide and could be used at airline counters and visa offices in
countries
across the world.
Genetic identification has also become a consumer commodity.
Paternity suits, cultural and family ancestry claims, inheritance
disputes and
the simple fear of losing loved ones in terrorist attacks or massive
calamities
have caused many to obtain their own DNA information and store it
personally
or in private repositories. Genetic counseling is commonly advised
for many couples who may be troubled by hereditary diseases or
conditions.
Such genetic screens are imperative for those carrying dreaded
inherited
diseases, such as Huntington's chorea, sickle-cell anemia, Tay-Sachs
or a
history of breast cancer. Registries are being built. Private labs
now market
their genetic testing.9 The field is proliferating in a global
community,
employing the Internet to enable all citizens from any country to
contribute
to and access various labs in Australia, the United States and
England.
Soon DNA fingerprints will become as common as the traditional
fingerprints
first discovered by Galton.1o He suspected they might reveal
much about an individual. But he probably never expected that within
a
century his term for the unique sworls on one's fingertips would
expand
into the name for genetic identification that would reveal the
secrets of a
person's biological past and future.
Eventually, genetic databases will go far beyond the identification
of
mere individuals. The science will create family genetic profiles
for use in
litigation, health and employment that may function as credit
bureaus do
today. The day is coming when such family information will be
routinely
sought in conjunction with employment, insurance and credit
granting.
The Medical Information Bureau (MIB) is the American insurance
industry's massive databank that dispenses coded medical information
and
certain lifestyle traits on the millions of individuals who have
applied for
health and medical insurance. More than sixteen million individual
records
are stored at any given time. Records are retired after seven years.
In their
constant battle against fraud, the MIB enables insurance companies
to double-
check the veracity of applications. Like a credit bureau, the MIB
collects
information its insurance company members report, and dispenses it
to them when they inquire. Since the 1970s, the MIB has included two
codes to signify hereditary conditions, this reporter has learned.
One code
is for hereditary cardiovascular conditions, and the other is a
general code
to designate "other family hereditary medical conditions," according
to
MIB officials. As of March 2003, neither hereditary code is sub
coded for
any specified condition such as epilepsy, congestive heart failure
or clinical
anxiety, officials said. Instead, the codes are designed to alert
insurers to
seek additional information from their applicants. I I
In a group interview with the databank's counsel, marketing director
and manager, MIB officials repeatedly insisted the two codes did not
signify
a genetic predisposition to a health problem, but instead merely "a
family hereditary" trait. Family hereditary codes, once gathered,
are
reported whether or not an individual applicant has shown any
symptoms.
The family's medical history itself, not the individual's condition,
is the
determining factor. MIB officials also insisted they would never
search out
and link other family members based on hereditary conditions. 12
No DNA repository-police, medical or governmental-is currently
linking family members. To do so would create modern-day,
geneticallystigmatized
Jukes or Kallikaks. It would be the first giant step down the road
of newgenics. The financial ramifications are extraordinary and the
potential
for targeted exclusion is manifest. If the world sees such
exclusions, it
will probably see them first and most dramatically in the insurance
industry.
Insurance companies vigorously claim they do not seek ancestral or
genetic information. This is not true. In fact, the international
insurance
field considers ancestral and genetic information its newest high
priority.
The industry is now grappling with the notion of underwriting not
only the
individual applicant, but his family history as well. Insurers
increasingly
consider genetic traits "pre-existing conditions" that should either
be
excluded or factored into premiums. A healthy individual may be
without
symptoms, or asymptomatic, but descend from a family with a history
of a
disease. In the industry's view, that individual presumably knows
his family
history; the insurance company doesn't. Insurers call this disparity
"asymmetrical
information," and it is hotly discussed at numerous industry
symposiums
and in professional papers. Governments and privacy groups
worldwide want to prohibit the acquisition and use of genetic
testing.
Many in the insurance world, however, argue that their industry
cannot
survive without such information, and the resulting coverage
restrictions,
exclusions and denials that would protect company liquidity. 13
AJune 2000 American Academy of Actuaries industry-only monograph
entitled "Genetic Information and Medical Expense," obtained by this
reporter, cautiously addressed the question. In a section headed
"Asymmetrical Information," the monograph asked: "Would a ban on the
use of genetic information merely prohibit insurers from asking for
genetic
tests, or would they also be barred from obtaining test results
already
known to the applicant? While a more encompassing ban may remove
applicants' fears of genetically based denial of coverage, the
imbalance of
information would leave insurers at a disadvantage." The section
concluded,
"... biased selection would have a direct impact on premium rates,
ultimately raising the cost of insurance to everyone."14
In the next section, entitled "Pre-existing Conditions," the
monograph
argued, "Such a ban [on genetic testing] could have more severe
consequences
over time, as genetic technology advances." In a series of attached
potential "market scenarios," the monograph speculated about
individuals
with healthy heredities subsidizing those destined to become ill. In
one scenario,
the monograph stated, "The ultimate character of the market
depends on the relative number of these 'genetically blessed'
individuals." I 5
A Spring 2002 American Academy of Actuaries briefing paper entitled
"The Use Of Genetic Information In Disability Income And Long-
Term Care Insurance," obtained by this reporter, suggests that the
insurance
industry could become insolvent without the benefits of predictive
testing. In a section labeled "Adverse Selection," the briefing
paper
declared, "Insurers maintain that the view of the consumer advocates
conflicts with the economic realities of the voluntary insurance
market.
Insurers are concerned that if they were prohibited from obtaining
genetic information from the medical records of applicants, then
those
applicants would know more about their genetic predisposition than
the
insurance company (asymmetric information), and more substandard and
uninsurable individuals would qualify for insurance. Premiums could
not
be adjusted adequately to cover the deterioration of the insured
population
because the higher prices would drive out the healthy. As the
insured
population disproportionately became weighted toward those who were
predisposed to certain genetic defects, experience would worsen and
premiums
would increase. The increase in premiums would further reduce
the number of healthy policy-holders and could eventually cause the
insurers to become insolvent."16
Insurance discrimination based on genetics has already become the
subject of an active debate in Great Britain. British insurers were
widely
employing predictive genetic testing by the late 1990s to underwrite
life
and medical insurance, and utilizing the results to increase
premiums and
deny coverage. The science of such testing is by no means
authoritative or
even reliable, but it allows insurers to justify higher prices and
exclusions.
Complaints of genetic discrimination have already become widespread.
A
third of those polled from genetic disorder support groups in
Britain
reported difficulties obtaining insurance, compared to just 5
percent from a
general population survey. Similarly, a U.S. study cited by the
American
insurance publication Risk Management found that 22 percent of
nearly one
thousand individuals reported genetic discrimination. A British
Medical
Journal study paper asserted, "Our findings suggest that in less
clear cut
instances, where genes confer an increased susceptibility rather
than 100%
or zero probability, some people might be charged high premiums that
cannot be justified on the actuarial risk they present." 17
Nearly three-quarters of a group surveyed by Britain's Human
Genetics
Commission (HGC) objected to insurer access to genetic testing. One
man
who tested positive for Huntington's told of being denied insurance
when
his genetic profile became known; later, when he did obtain a
policy, it was
five times more expensive. One forty-one-year-old London woman
recalled that after her genetic report showed a gene associated with
breast
cancer, she was unable to buy life insurance. In consequence, when
she
attempted to purchase a horne in 1995, it was more costly. Chairman
of the
HGC Helena Kennedy said: "Most of us are nervous and confused about
where technology might be leading, and the potential challenges to
privacy
and confidentiality. We know from our survey that people are worried
that
these developments might lead to discrimination or exploitation, and
are
skeptical of the law's ability to keep up with human genetics."18
A Code of Practice for genetic testing by British insurers was
established
in 1997, but in 2001, Norwich Union Insurance, among other firms,
admitted it had been using unapproved genetic tests for breast and
ovarian
cancers, as well as Alzheimer's. British insurers began widely
utilizing
genetic tests after a leading geneticist consulting for the
industry's trade
association recommended the action, a Norwich Union executive
explained. The widespread concern in England is
generation-to-generation
discrimination pivoting not on race, color or religion, but on
genetic
caste. "We are concerned, of course," warned Dr. Michael Wilks, of
the
British Medical Association's Medical Ethics Committee, "that the
more
we go down the road of precision testing for specific patients for
specific
insurance policies the more likely we are to create a group who
simply will
not be insurable." Wilks called such a group a genetic "underclass."
A
member of Parliament characterized Norwich Union's actions as an
attempt to construct a "genetic ghetto."19
The British government ultimately imposed an industry-wide
moratorium
permitting the use of just one type of test. In the subsequent
threeyear
period, out of 800,000 Norwich policies, only 150 involved genetic
tests. But British insurance industry sources argue that unless
widespread
genetic testing and access is restored, the industry and the health
service
will be overrun with claims.20
Moreover, some insurers may also want genetic data so they can use
the
information to rescind insurance, claiming that an individual
fraudulently
or even inadvertently omitted ancestral information from an
applicationeven
if the insurance claim is unrelated to the medical condition.
Precedents abound for such retroactive invalidations, albeit based
on family
health history rather than genetic testing. In a 1990 Quebec case, a
man
was killed in a car crash. He carried the gene for a degenerative
disease, a
form of myotonic dystrophy, and knew his father had suffered from
the
malady but omitted the information from his 1987 application for a
$30,000 policy. His widow was denied a policy payment when
Industrial
Alliance, one of Quebec's largest insurers, prevailed in court,
claiming
fraud by omission. An Industrial Alliance attorney told this
reporter that
the company was aware the man came from a region known for a great
deal
of consanguinity and where myotonic dystrophy is common. Hence, the
company's postcrash investigation bore fruitY
The Industrial Alliance attorney added that such policy
invalidations,
based on applicants' statements, are common in Canada. A company
attorney
explained that his firm had even invalidated one car crash death
when
they learned the applicant indicated he was not a smoker, and a
postcrash
investigation revealed the man had actually smoked within the
previous
year. "Even my mother was angry at me for that one," the company
attorney
admitted. "She said, 'What does cigarettes have to do with the car
crash?'" But, explained the attorney, under Quebec law, within the
first two
years of a life insurance policy, any material omission, deliberate
or accidental,
can be investigated to invalidate a life insurance claim. Mter two
years, Quebec insurance companies are allowed to invalidate a policy
if
they can prove a deliberate omission.22
The Quebec precedent, which is now spreading to other countries,
means that if a person does not possess his genetic information-even
innocently-he is being omissive. On the other hand, possessing it
makes
the data automatically disclosable to the company at the point of
application.
Insurers worldwide argue that if they cannot require testing, they
should be permitted access to the genetic information individuals
will
increasingly feel obligated to gather. Either way, genetics will
soon be an
underwriting factor in everyone's personal insurance.
Information from America's MIB, and repositories like it, is often
used
by insurers to detect omissive statements, this as a basis for
denying claims
and invalidating policies. The MIB cites combating application fraud
as its
chief mission. Ironically, many applicants simply do not know their
ancestors'
health conditions. For example, many American Jews descended from
Europe do not know the exact health conditions of ancestors killed
in the
Holocaust or Eastern Europe's pogroms. Many African-Americans know
little of their ancestors reared in slavery or abject
twentieth-century
poverty. Our mobile society includes many single-parent families
where little
is known about ancestral health problems. The paucity of genetic
information
is all the more reason for insurers to press for genetic bureaus to
emulate the medical and credit bureaus they currently employ.
A cross-referenced genetic information bureau would permit insurers
and financial institutions to create the commercial "genetic
underclass"
envisioned by critics. Insurers deny that such databanks are in the
offing or
even desired. Many continue to argue that the insurance community is
simply
not interested in genetics.
Yet the worldwide insurance industry is indeed rushing to integrate
advanced genetics into their everyday business. In England, an
insurance
industry program called the UK Forum for Genetics and Insurance
regularly
brings genetic scientists and insurance executives together. The
debate is an international one because all insurance is global. All
risk-no
matter how local-is studied, shared and reinsured by worldwide
layers of
the insurance industry. The International Actuarial Association's
2002 colloquium
in Cancun highlighted genetics as one of its four main agenda
items. "Are we expecting trouble for the insurance industry from
genetic
information?" an IAA program memo pointedly asked. MIB's industry
intelligence website, as of March 2003, featured a "Special Section:
Genetics" offering an in-depth survey of genetics and insurance,
including
writings on genetic discrimination, "Balancing Interests in the Use
of
Personal Genetic Data," and one major reinsurer's article entitled
"The
Future Will Not Wait for US."23
For decades, insurers, realtors and financial institutions engaged
in
lucrative racial, sexual and geographic discrimination and
preferential
treatment known as redlining and greenlining. The terms derive from
the
colored lines drawn on maps by insurers and realtors to select
neighborhoods
for discrimination or preference. Such practices are now outlawed in
many countries. But for genelining, the laws in various countries
are vague,
insufficient or nonexistent. Entire extended families of undesirable
insureds could be identified with the same subtlety and secrecy with
which
geographic and ethnic undesirable insureds were identified a few
decades
ago. Corporate newgenics, blind to the color of one's flag, skin or
religious
creed, would be driven only by profit.
While insurers and banks may create a genetic underclass in finance,
employers may create a genetic underclass among workers. AI; early
as the
1960s, Dow Chemical undertook long-term genetic screening in search
of
mutagenic effects arising from its workplace. A 1982 federal
government
survey of several hundred U.S. companies found that 1.6 percent
admitted
they were utilizing genetic testing, mainly for hazardous workplace
monitoring
and screening new hires. In 1997, an American Management
Association survey reportedly indicated that 6-10 percent of
employers
polled had asked their employees to submit to voluntary genetic
testing. By
and large, such screening was conducted openly and was necessary to
protect
workers from hazardous employment environments.24 The increase in
employer testing since the Human Genome Project was completed in
June
2000 can only be imagined. How each company will use its information
is
neither standardized nor regulated.
In 1994, investigators discovered that the University of
California's
Lawrence Berkeley Lab went further than simply monitoring the
workplace.
At the suggestion of the U.S. Departtnent of Energy, which largely
funds the lab, medical officers tested employees' blood and urine
samples
for syphilis, sickle-cell and pregnancy. African-Americans and
Latinos were
often repeatedly tested for syphilis. The one white employee
repeatedly
tested for syphilis was married to an African-American. Employees
sued.
When asked by u.s. News &' World Report why only minorities were
singled
out for repeated syphilis testing, a Berkeley Lab medical officer
reportedly
replied: "Because that's where the prevalence of the disease is. How
come
only people over a certain age would get an EKG? See the logic?" The
man
reportedly later denied he had made the inflammatory statement to
U.S.
News &' World Report.25
A landmark federal court ruling in 1998 in favor of the Berkeley Lab
employees established the Constitutional right of citizens to their
genetic
privacy. The court's opinion declared, "One can think of few subject
areas
more personal and more likely to implicate privacy interests than
that of
one's health or genetic makeup." The lab settled for $2.2 million in
2000
and deleted the employee information from its computers.26
Burlington Santa Fe, one of North America's largest railroads, went
a
step further in an attempt to stem soaring carpal tunnel claims
byemployees.
Its medical director had read two medical journal articles on carpal
tunnel, including one that indicated a genetic predisposition for
the syn
drome. In March of 2000, Burlington launched a program of
surreptitious
genetic testing of thirty-five employees making claims for carpal
tunnel to
determine whether they possessed genetic predisposition. Tests on
some
twenty employees were actually completed. The intent was to help the
company deny carpal tunnel c1aims.27
Burlington's medical director selected Athena Diagnostics, the
nation's
premier genetic testing laboratory, to analyze the tests. Athena
annually
performs some 70,000 doctor-referred genetic tests for conditions
such as
hearing loss, movement disorders, epilepsy, mental retardation and
carpal
tunnel, a lab source told this reporter. The lab did not understand
the purpose
of Burlington's testing, a lab source said. Once they learned it was
not
for therapeutic but insurance purposes, "we were dismayed," a senior
Athena executive told this reporter. Burlington was sued on a Friday
afternoon
in February 2001. Senior executives spent a frantic weekend
reviewing
the charges and settled by Monday with a $2.2 million payout to
employees. Athena soon implemented safeguards such as requiring a
signed patient authorization. But according to a company source,
Athena
still accepts genetic test requests from any licensed
physician-whether on
behalf of an individual, insurance company or attorney-and from any
licensed lab in the U.S. or overseas.28
In the late nineties, government officials in Hong Kong refused to
hire
two men and fired a third after learning that each had a
schizophrenic parent.
The men had variously worked as a fireman, an ambulance worker and
a customs officer. At first, the men were not told why the actions
were
taken. Government officials claimed the men were not fit for work
because
their parentage suggested a 10 percent chance they would also become
schizophrenic. In fact, the officials had misread a genetic
textbook; in reality
there was only a 4 percent chance the employees would develop
schizophrenia
at their ages, compared to 1 percent for the general population.
The three men sued. The judge stated that the "genetic liability to
develop
the disease their parent suffers from does not present a real risk
to safety at
either place of employment" and awarded the three $2.8 million in
damages.
29 There was no genetic test involved in these three cases, just a
review
of the employees' written personnel files. But the incident again
illustrates
the danger of genetic information being misinterpreted and abused by
local
officials and corporate executives who have the power to
discriminate.
Are national genetic databanks of all citizens coming? Sir
Alec]effreys, the
founder of DNA fingerprinting, originally believed that DNA
fingerprints
should be limited to criminals. But late in 2002, he changed his
mind and
declared that every person's profile should be added to the
databank.
Former New York City mayor Rudolph Giuliani has urged that a DNA
fingerprint
be recorded for every American at birth.3D That day is coming.
In 1998, Iceland created the world's first national DNA database of
its
citizens. Almost all of its 275,000 citizens trace their lineages to
the original
Nordic Vikings of a prior millennium. In a unique arrangement,
Iceland's
national genetic code was sold to the genetic research and
pharmacogenetic
industries through an entity called deCODE Genetics. Less than 8
percent of Iceland's population opted out of the voluntary program,
hence
deCODE possesses virtually a complete national genetic and
hereditary
portrait ofIceland. Scientists at deCODE are currently utilizing the
information
in their study of a range of debilitating conditions, including
respiratory
and muscular diseases. Safeguards have been built into the program
to conceal individuals' names. But at least one Icelander has sued
the government
to have her father's genetic history removed. As of March 2003,
the case is still winding its way through Icelandic courts.
Iceland's national
genomic information will be made available to a wide variety of
scientific,
commercial and governmental entities in an Internet-based system
that
employs massive data storage drives codenamed "Shark."3l
One main company manages and controls Iceland's genetic data. That
company is already positioned to become the worldwide manager and
disseminator
of all genomic information globally. In anticipation of that day,
the
company currently operates genomic offices in California, New York,
Zurich,
Haifa, New Delhi and Tokyo. The name of the company is IBM. Its
Iceland
project operates under a division known as "Life Services-Nordic."32
Estonia became the second nation to databank its entire population.
In
2001, Estonia created the Estonia Genome Project to capture the
genetic
profiles of its 1.4 million citizens. A biotechnology industry
article cited by
the government's website explains, "Unlike remote Iceland, Estonia
has
long been a European stomping ground, ruled by a succession of
Russian,
Swedish, German, and Danish invaders who left their genetic
heritage.
Estonia's ethnic mix thus could be a major draw for pharmaceutical
companies
that want to find disease genes common to most Europeans."33
The tiny Polynesian nation of Tonga sold the information on its
unique
gene pool to Autogen, an Australian genetic research firm, in 2000.
Tonga's
170 islands host a group of some 108,000 natives isolated for more
than three
millennia. Autogen was quoted as explaining its interest in Tonga's
population:
"The less mixture of inter-racial marriage, the more likely you are
to be
able to determine a particular gene that may be responsible for a
particular
disease, whether it's breast cancer or whether it's kidney
disease."34
After reevaluation the arrangement between Tonga and Autogen was
cancelled. Autogen instead focused on a Tasmanian genetic
repository.
"Tasmania is one of only a few populations in the world where up to
sevengeneration
family pedigrees are available," the company announced. "This
makes it an ideal location to study the genetics of complex diseases
such as
obesity and diabetes."35
In England, the UK Biobank recently opened as a repository for the
medical information and genetic data of a half million volunteers.
More
commercial initiatives are underway to secure national genetic
information
around the world using ethnic, national, racial and even religious
parameters.
The pharmaceutical companies, governmental agencies and research
foundations that operate these databanks will interconnect them
globally.
The devoted men and women laboring on these national projects are
joining
research hands to create new disease-fighting drugs, unlock the
mysteries
of hereditary disease and improve the quality of human life. In the
process, prodigious masses of individual genetic information are
being
gathered. This data can be exchanged and retrieved at the speed of
light
from a computer and even downloaded to a cell phone.36
Lawmakers worldwide recognize both the great potential to mankind
and the profound dangers. In America, the Genetic
Anti-Discrimination
Bill, which would prohibit genetic testing in group insurance and
employment,
has been percolating in Congress in various forms for years. In
previous
anti-discrimination laws, Congress has sought to remedy entrenched
injustice. But in this case one of the bill's sponsors, U.S.
Representative
Louise Slaughter of New York, described the proposed legislation as
"prophylactic,"
since Congress can hardly imagine what genetic misuses are in
store. As of March 2003 the bill was stalled.37
Other countries are also grappling with protective legislation. As
of
March 2003, Finland and Sweden have been debating legislation for
years.
Denmark, however, has already banned insurance companies from
utilizing
genetic information. Employers in Austria are prohibited from
utilizing
employee genetic data obtained from any source. French bioethics
legislation
prohibits access by employers and insurance companies.38
But in reality, there are so many uses for genetic
information-proper
and improper, obtainable from so many globalized sources, in so many
for
mats, employing such diverse and fast-moving technical and
scientific jargon-
that drafting genuine protective legislation is frustrating to
lawmakers
and genetic privacy groups alike. Is a paper notation of a history
of heart
disease in a family the same as a genetic predisposition? Is a
cholesterol test
genetic? Is bloodwork genetic testing? Is information imported from
one
country governed by another country's laws? Japanese employers
utilize
genetic labs in America; whose safeguards on access, dissemination
and use
govern? What if the origin and destination is cyberspace? If an
individual
knows certain genetic information, why shouldn't he disclose it to
insurance
companies and employers like any other required medical information?
The problem is growing exponentially. "We need to stop genetic
discrimination
before it becomes widespread," Representative Louise
Slaughter told this reporter. "The U.S. Congress has been debating
my
legislation for over seven years. Genetic discrimination is already
occurring.
If we can't pass a ban on these practices today, what are we going
to do
as the science becomes more complex? It is crucial that we, as a
nation,
state unequivocally that genetic discrimination is wrong and will
not be tolerated."
39 Like-minded legislators and advocates in many countries echo
those words.
Prominent voices in the genetic technology field believe that
mankind is
destined for a genetic divide that will yield a superior race or
species to
exercise dominion over an inferior subset of humanity. They speak of
"selfdirected
evolution" in which genetic technology is harnessed to immeasurably
correct humanity-and then immeasurably enhance it. Correction is
already underway. So much is possible: genetic therapies, embryo
screening
in cases of inherited disease and even modification of the genes
responsible
for adverse behaviors, such as aggression and gambling addiction.
Even more exotic technologies will permit healthier babies and
stronger,
more capable individuals in ways society never dreamed of before the
Human Genome Project was completed. These improvements are coming
this decade. Some are available now.
But correction will not be cheap. Only the affluent who can today
afford personalized elective health care will be able to afford
expensive
genetic correction. Hence, economic class is destined to be
associated with
genetic improvement. If the genetically "corrected" and endowed are
favored for employment, insurance, credit and the other benefits of
society,
then that will only increase their advantages. But over whom will
these
advantages be gained? Those who worry about "genelining," "genetic
ghettos" and a "genetic underclass" see a sharp societal gulflooming
ahead
to rival the current inequities of the health care and judicial
systems. The
vogue term designe1' babies itself connotes wealth.
The term designer babies is by and large just emblematic of the idea
that
genetic technology can do more than merely correct the frail aspects
of
human existence. It can redress nature's essential randomness.
Purely elective
changes are in the offing. The industry argues over the details, but
many assure that within our decade, depending upon the family and
the
circumstances, height, weight and even eye color will become
elective.
Gender selection has been a fact of birth for years with a success
rate of up
to 91 percent for those who use it.40
It goes further-much further. A deaf lesbian couple in the
Washington,
D.C., area sought sperm from a deaf man determined to produce a
deaf baby because they felt better equipped to parent such a child.
A child
was indeed born and the couple rejoiced when an audiology test
showed
that the baby was deaf. A dwarf couple reportedly wants to design a
dwarf
child. A Texas couple reportedly wants to engineer a baby who will
grow
up to be a large football player. One West Coast sperm bank caters
exclusively
to Americans who desire Scandinavian sperm from select and
screened Nordics.4J
All of us want to improve the quality of our children's futures. But
now
the options for purely cosmetic improvements are endless. A
commercialized,
globalized genetic industry will find a way and a jurisdiction. It
will be
an international challenge to successfully regulate such genetic
tampering
and the permutations possible because few can keep up with the
momentto-
moment technology.
It goes much further than designer babies. Mass social engineering
is still
being advocated by eminent voices in the genetics community.
Celebrated
geneticist]ames Watson, codiscoverer of the double helix and
president of
Cold Spring Harbor Laboratories, told a British film crew in 2003,
"If you
are really stupid, I would call that a disease. The lower 10 per
cent who really
have difficulty, even in elementary school, what's the cause of it?
A lot of people
would like to say, 'Well, poverty, things like that.' It probably
isn't. So I'd
like to get rid of that, to help the lower 10 per cent."42 For the
first half of the
twentieth century, Cold Spring Harbor focused on the "submerged
tenth";
apparently, the passion has not completely dissipated.
Following in the footsteps of Galton, who once amused himself by
plotting the geographic distribution of pretty women in England,
Watson
also told the film crew, "People say it would be terrible if we made
all girls
pretty. I think it would be great." Watson gave no indication of
what the
standard for beauty would be.43
Some who speak of human cloning speak of mass replication of a
perfected
species. That is nothing less than a return to the campaign to
create
a master race-but now aided by computers, digital communications and
a
globalized commercial infrastructure to accelerate the process. Some
of
America's leading thinkers on genetic evolution believe that within
a few
hundred years, the world will indeed be divided into the
"genetically
endowed"-or "GenRich" as some call them-and those who will serve
them, almost like the worker bees Davenport envisioned.44 Advocates
of
the genetic divide encourage it as a matter of personal choice, and
argue
that the same man who purchases eyeglasses, tutors his child or
seeks medical
attention to conquer his biological limitations is destined to take
the
next step and achieve genetic superiority. This is not the
philosophy as
much as the raison d'etre of newgenics.
It will transform the human species as we know it. Transgenic
creatures-
created from two or more species-are now commonplace.
Genomic engineers have implanted a human embryo in a cow. In British
Columbia, fish hatcheries have engineered an oversized salmon dubbed
"Frankenfish" that is more profitable to raise. Geneticists have
inserted the
jellyfish's gene for luminescence into rhesus monkey DNA, creating a
monkey that glows in the dark; the creature was named ANDi for
"inserted
DNA" in reverse. No one can successfully legislate or regulate
experimentation
on monkeys. In the suburbs of Washington, D.C., J. Craig Venter,
one of the scientists who led the efforts to map the human genome,
has
announced plans to create a new form of bacterial life to aid in
hydrogen
energy production.45
Bioethicists are of little help in this hurtling new world. The
still
emerging field of bioethics includes self-ordained experts who grant
interviews
to television talk shows and newspapers even as they consult as
scientific
advisors to the very corporations under question. The do's and
don'ts
of genetic tinkering are being revised almost daily as the
technology breeds
an ever-evolving crop of moral, legal and social challenges that
virtually
redefine life itself.
It will take a global consensus to legislate against genetic abuse
because no single country's law can by itself anticipate the
evolving intercollaborative
nature of global genomics. Only one precept can prevent
the dream of twentieth-century eugenics from finding fulfillment in
twenty-fIrst-century genetic engineering: no matter how far or how
fast
the science develops, nothing should be done anywhere by anyone to
exclude, infringe, repress or harm an individual based on his or her
genetic
makeup. Only then can humankind be assured that there will be no
new war against the weak.
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