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Date: Thu, 05 Feb 1998 18:32:42 -0500
From: klaatu <klaatu@clark.net>
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Organization: You've gotta be kidding, right?
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Subject: GENETIC TESTS Breach of Privacy in US Workplaces
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Story extracted and paraphrased from a _Washington Post_ article by Rick
Weiss, "Genetic Tests in Workplace Can Be Privacy Breach, Appeals Court Says"
- 
Thursday 5 February, 1998 - page A8.


For years, the Lawrence Berkeley National Laboratory had obtained samples of
urine and blood, as part of a pre-employment physical.

What the employees didn't know was that the Laboratory was testing for not
only the usual things such as drug-abuse, but was also testing black employees
for the genetic markers of sickle-cell anemia, testing female employees for
pregnancy, and also testing for syphilis.

One employee was dismayed to find the tests and their results listed in their
company medical record. She and another six employees filed suit in a US
District Court for invasion of privacy and violation of their civil rights.
the court ruled against them, calling the testing a "de minimus" offense, as a
an extension of the testing in a reasonable employment physical.

The 9th US Circuit Court of Appeals (California) unanimously overturned the
previous dismissal of the suit. Judge Stephen Reinhart (quoted from the
_Post_) said, "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 ruling further elaborates that genetic testing may be allowed only when
permission for such tests has been expressly granted, or as part of an
employment physical where the test result would be directly relevant to a
person's ability to perform their job. Otherwise, such testing violates the
Fourth Amendment Constitutional protection against unreasonable search and
seizure, which implies a right to privacy, and also would violate the express
right to privacy in many State constitutions. In this particular case, this
seems to have been mere snooping, and taking advantage of possession of
samples obtained under one pretext, and performing tests outside of that
context or pretext. A permitted usage, which was not shown in this case, might
(for instance) be a test for a genetic marker associated with sensitivity to a
chemical which would ordinarily be harmless, but carcinogenic in the case of
those possessing genes linked with the marker.

This is an historic decision, according to many experts in medical privacy
law. Medical privacy is an issue of increasing importance, as HMO and other
managed-care health maintenance organizations strive to lower costs, primarily
through preventative measures. In search of profitability, many HMO have come
under fire for denial-of-service issues involving restrictions on doctors'
abilities to perform or order services, and also limiting durations of
hospital stays; and also over other issues related to denial of potentially
high-risk patients. In an era of intense data-sharing, and corporate buy-outs,
one can find that information which was formerly closely guarded at one
establishment, is now practically being freely-circulated within the
managed-care and other insurance communities, due to the purchase of the
former establishment by a larger corporation. Occasionally such information
has come on the open market. The potential damage to a career is almost
incalculable.

The _Post_ quotes one Wendy McGoodwin (executive director of the Council for
Responsible Genetics) as saying: "None of us want out employers peeking at our
genes... The secret testing that went on at [the laboratory] violates not only
the Constitution but also every American's sense of common decency. Employees
should be evaluated on the basis of their merits and abilities, and not on the
basis of their genetic makeup."

One Francis Collins, chief of the National Human Genome Research Institute
notes: "The number of people subjected to this kind of discrimination so far
seems to be small, but if you ask companies what their plans are, many say
they are seriously considering adding genetic tests to their employment
screening in the next few years... We can stop that if we move swiftly before
it becomes a common practice."


Please see pages beneath this one, in particular see "In the News" and also
see the Ethical Legal and Social Implications pages. 

http://www.nhgri.nih.gov/ - National Human Genome Research Institute.

for a fictional treatment, please see

http://earthops.org/tracy.html


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