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Read Making a Killing

home / healthcare / in the media

Kansas City Starr
Jul 02, 2000


Discrimination and the Gene Code

When I was a student, one of my closer friends was Darryl, a
self-described black nationalist who was the crossover candidate for
president of the student union at our predominantly white East Coast

Darryl won the election and also made university history. He was
popular. You could find him, between classes, hanging out at the
Student Union building with whites, Asian-Americans, Jews, other
blacks, whomever.

Darryl was for black people - that was clear - but not at the
expense of other people and their rights. He became active in both
the black and general alumni associations. He rubbed elbows with the

Science news last week made me think of Darryl, with whom I'd
lost touch over the years. Darryl's studies were in the sciences,
specifically genetics.

I recall asking him, "Why genetics?" as a career field.

Darryl responded with prophetic brilliance.

"One day," he said, stroking his beard, "they are going to be
able to make people. And when they do, do you think they will make
any more black people?"

The answer was obvious.

The conversation is a vision clear in my mind, as if it hadn't
actually happened so long ago. The last memory-jog of our dialogue
came with the announcement in the 1990s about Dolly, the genetically
engineered sheep in Scotland. The latest jog came last week with the
joint announcement by Francis S. Collins, head of the Human Genome
Project, and J. Craig Venter, head of Celera Genomics.

Working separately and then together, these scientific efforts
cracked the genetic code for human life. Using the DNA of an
unidentified white male as primary donor - surprise! - scientists
believe they have what has conservatively been called a "working
draft" of the human genome.

Such news does boggle the mind, as well as stretch the
imagination in good and evil directions. Will genetic discrimination
be close behind?

The day the genome genie was let out of the bottle, the Coalition
for Genetic Fairness issued this statement:

"Today's announcement promises better health for millions of
Americans, but that promise will be kept only if Congress passes
comprehensive federal protection from genetic discrimination.      
Our legal system lags dangerously far behind the genetic revolution.
A patchwork of state and limited federal laws leaves Americans
vulnerable to genetic discrimination by health insurers and

A person's gender, ethnicity, and disability already have been
workplace disqualifiers. Employers already snoop into medical files.
People who make it their business to know how many miscarriages
you've had to what movies you've rented aren't likely to knock before
entering the double-helix door.

Last month a Tennessee-based national insurer agreed to a $206
million settlement in a class-action suit in which it was disclosed
that black policyholders were charged more for burial insurance than
whites. Don't think some insurers wouldn't like to dive into the gene

What if some people thought, as does syndicated columnist "Dr.
Laura," that homosexuals are the result of "biological error"? If
"they" won't make more blacks, do you think "they" will want more
gays and lesbians?

The genetic fairness coalition includes the National Partnership
for Women & Families, formerly the Women's Legal Defense Fund. Its
Web site warns women about possible genetic profiling:

"There are now genetic tests for more than 400 disorders, and
many of the most widely available tests are for women. Millions of
women and families stand to benefit from improved prevention,
detection and treatment of diseases like breast and ovarian cancer.
However, all the advances in the world will not help women and
families if - by participating in genetic research or taking a
genetic test - they can be denied job opportunities, health care, or
both, based on their genetic information."

Jamie Court, advocacy director of the Santa Monica-based
Foundation for Taxpayer & Consumer Rights, issued a more frightening
warning. The foundation, a constant burr under HMOs' saddles, last
week raised concerns about genetic privacy.

"Today, banks typically utilize 'credit scoring' to determine
whether an applicant is approved for a loan and at what interest
rate," Court said, in a written statement. "What if banks,
insurance companies and other corporations could view genetic
profiles of applicants, a genetic score based on a simple DNA test?"

Knowing Darryl, if he's no longer in genetics, he's probably in
law. We, the people, will need experts in both.

Rhonda Chriss Lokeman is a member of the Editorial Board. Her
column appears on Sundays. To reach her, call (816) 234-4475, or send
e-mail to

LOAD-DATE: July 3, 2000

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