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Currently,
as many as nine pieces of proposed legislation in the U.S. Congress,
plus many state initiatives, include provisions aimed at protecting
us from genetic discrimination. Prompted by ethicists operating
out of rights theory, these proposals invoke the principles of
confidentiality and privacy. They argue that genetic testing should
be voluntary and that the information contained in one’s
genome be controlled by the patient. This “privacy defense”
argument presumes that if information can be controlled, then
the rights of the individual for employment, insurance, and medical
care can be protected.
There
are some grounds for believing
this approach will succeed. Title VII of the 1964 Civil
Rights Act restricts preemployment questioning to work-related
health conditions, and its paragraph 102.b.4 potentially protects
coverage for the employee’s spouse and children. Current
legislative proposals seem to favor privacy.
Nevertheless,
it seems the privacy defense can, at best, be a mere stop-gap
effort. In the long run, it will probably fail. Insurance carriers
will press for legislation more fair to them, and eventually protection
of privacy may slip. In addition, the existing state of computer
linkage makes it difficult to prevent the movement of data from
hospital to insurance carrier and to anyone else intent on finding
out. In addition, one of the most important factors is the principle
that genome information should not ultimately
be restricted. The more we know and the more who know,
the better the health care planning can be. But this is contingent
on whether we can have information without discrimination. The
only way to obtain this is to restructure the employment-insurance
health care relationship. The current structure seems to make
it profitable for employers and insurance carriers to discriminate
against individuals with certain genetic configurations—that
is, it is in their best financial interest to limit or even deny
health care. A restructuring seems called for so that it becomes
profitable to deliver, not withhold, health care. To accomplish
this the whole nation will have to become more egalitarian—that
is, to think of the nation itself as a single community willing
to care for its own constituents
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| Contributed by: Dr. Ted Peters
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