Ban Genetic Discrimination
Copyright 2000 Globe Newspaper Company
The Boston Globe
August 7, 2000, Monday, THIRD EDITION
Richard Sobel and Harold J. Bursztajn
Richard Sobel is senior research associate and Dr. Harold J. Bursztajn
is co-director of the program in psychiatry and the law at Harvard Medical
The magnificent achievement of decoding the human genome raises serious
issues of genetic discrimination.
Knowing an individual's genetic makeup creates the possibility that employers,
health insurance firms, or life and disability insurance companies may
discriminate against people who carry a gene tied to a specific disease.
While not definitely predicting illness because experiences and the environment
play a central role in disease, knowing that someone of a certain age
possesses, for instance, a genetic mutation for breast cancer provides
a basis for health or life insurance companies to deny coverage or charge
prohibitive rates. An employer might be reluctant to hire or promote
such a person to a higher position for fear she might become ill later.
In fact, a recent survey of employers by the American Management Association
finds that 30 percent ask for genetic information about employees and
7 percent admit to using the information for hiring and promotion decisions.
A full readout of anybody's genetic code will probably find some predictors
of future illness. This, as genome pioneer Craig Venter noted, can make
everyone uninsurable in an era when complete medical confidentiality
Yet, as both he and his NIH counterpart Francis Collins indicate, in
the most predictive case, schizophrenia, carrying the gene only predicts
about a 50 percent chance of getting the illness since environment play
a powerful role in triggering the disease. While genetic tests for a
few diseases like Huntington's chorea definitely predict eventual illness,
we cannot know how certain the onset of genetic illness is until we can
understand and control the environmental triggers.
For instance, potential mental retardation or hyperactivity from the
genetic condition PKU (phenylketonuria) can be totally avoided by a diet.
More familiarly, cutting back cholesterol intake reduces the likelihood
of heart disease. Thus not only genetic, but also environmental factors,
human choices and personal attitudes, influence the development of diseases.
Genetic diversity, moreover, can contribute to success in difficult environments:
the apparent genetic flaws of the sickle cell gene can provide immunity
to diseases like malaria. But since genetic markers will probably be
misinterpreted as definite evidence of future illness by companies avoiding
risk, knowing every individuals genome could make anybody subject insurance
or employment discrimination.
Examples of genetic discrimination are now becoming more widely known.
For some time the Air Force restricted black personnel carrying the sickle
cell gene from flying for the unfounded concern that they would lose
consciousness at high altitudes. A former army officer's embarrassment
when his genetic reproductive anomaly was revealed forced him to move
out of town. A North Carolina officer worker diagnosed with a genetic
disease was fired because of the high drug costs for her employer-insured
health plan. More examples will surface as genetic testing becomes more
Ethical concerns should prevent this scientific discovery from becoming
the source of discrimination, but more practical reasons indicate that
the potential of genomics research can't be realized for improving health
until people feel secure in consequences of finding out their genetic
makeup. Legislation and regulations need to prohibit discrimination and
deal with the effects of any that occurs.
Universal medical coverage would preempt some of these problems, but
most people today rely on private health insurance, but not the potential
for life insurance or employment discrimination.
Antidiscrimination laws need to be passed or amended specifically to
prevent employers from asking for and using genetic information for hiring,
promotion or firing decisions, and compensate those who are the victims
of discriminatory actions. Health, life, and disability insurance companies
should not be able to request genetic profile or deny coverage based
upon them. Individuals should not be forced to undergo genetic testing
or turn test results to insurers or employers.
Both the public and elected officials have become increasingly concerned
about privacy issues, particularly medical confidentiality. In February
President Clinton signed an executive order outlawing the use of genetic
information in government hiring and promotion decisions. The American
With Disabilities Act bans some genetic workplace discrimination, and
Health Insurance Portability and Accountability Act restricts from preexisting
conditions those identified by genetic tests.
About 35 states have some genetic nondiscrimination laws. Modeling on
civil rights statutes, Massachusetts is posed to pass one of the strongest
bills that prohibits discrimination in banking, housing, health insurance
While it gives patients control over their genetic tests, it only sets
up a commission to study life insurers' access to genetic tests.
The climate is right for Massachusetts to lead and for Congress to consider
comprehensive national antidiscrimination legislation such as the Genetic
Nondiscrimination in Health Insurance and Employment Act or amending
the Civil Rights Act of 1964 to bar genetics as a basis for discrimination.
Equal protection in the 14th Amendment needs to apply to individuals
whose genes may suggest future problems.
As privacy in the medical and genetic spheres becomes a political issue
for candidates and voters alike, we can expect to hear more about employment
and insurance discrimination while more people press for antidiscrimination
and compensation measures. Carefully drafted measures also benefit employers
concerned about the potential for unjustified claims.
This tremendous scientific breakthrough needs to be promoted and protected,
while its social consequences are addressed constructively. By recognizing
the benefits of genetic diversity and keeping potential beneficiaries
from suffering discrimination, we provide more fairness in the life and
health care as well as the basis for more public acceptance of other
advances in science and medicine.