Discrimination and the Gene Code

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Kansas City Starr

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 [email protected].

LOAD-DATE: July 3, 2000

Consumer Watchdog
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