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Byline: Robert S. Boyd Knight-Ridder Tribune News Wire

The extraordinary progress in human genetics Human genetics

A discipline concerned with genetically determined resemblances and differences among human beings. Technological advances in the visualization of human chromosomes have shown that abnormalities of chromosome number or structure are surprisingly
 research is turning out to have a dark side - the growing danger of employment and insurance discrimination against people with a flaw in their own or a relative's genes.

A new survey of 332 people in families at risk for a genetic disease, such as cystic fibrosis cystic fibrosis (sĭs`tĭk fībrō`sĭs), inherited disorder of the exocrine glands (see gland), affecting children and young people; median survival is 25 years in females and 30 years in males.  or sickle cell anemia sickle cell anemia
A chronic, usually fatal inherited form of anemia marked by crescent-shaped red blood cells, occurring almost exclusively in Blacks, and characterized by fever, leg ulcers, jaundice, and episodic pain in the joints.
, found that 43 percent of them believe they have been treated unfairly by insurance companies or employers.

For example, a woman with an inherited skeletal disorder said she was fired the day after she told her boss about her diagnosis. Her job was restored after she sought legal help.

A father of four said his family was denied life insurance after he told the salesman he and two of his children were afflicted af·flict  
tr.v. af·flict·ed, af·flict·ing, af·flicts
To inflict grievous physical or mental suffering on.

[Middle English afflighten, from afflight,
 with Marfan's syndrome Mar·fan's syndrome
A hereditary disorder principally affecting the connective tissues of the body, manifested in varying degrees by excessive bone elongation and joint flexibility and by abnormalities of the eye and cardiovascular system.
, a rare genetic disease which sometimes leads to a rupture of the aorta.

``For many people with inherited disorders, health insurance may mean the difference between life and death,'' said Virginia Lapham of the Georgetown University Georgetown University, in the Georgetown section of Washington, D.C.; Jesuit; coeducational; founded 1789 by John Carroll, chartered 1815, inc. 1844. Its law and medical schools are noteworthy, and its archives are especially rich in letters and manuscripts by and  Child Development Center, principal author of the study published in this week's Science magazine.

Although the survey was not a scientific sample, it appears to confirm long-held fears about the side effects Side effects

Effects of a proposed project on other parts of the firm.
 of genetic research.

For a few years in the 1970s, for example, insurance companies denied coverage to people who carried the gene for sickle cell anemia, even though they were perfectly healthy and might never develop the disease.

``The fear of genetic discrimination in health insurance is a reality,'' said Karen Rothenberg, a law professor at the University of Maryland University of Maryland can refer to:
  • University of Maryland, College Park, a research-extensive and flagship university; when the term "University of Maryland" is used without any qualification, it generally refers to this school
, who has studied the issue in several states.

The problem is bound to grow more serious as the pace of genetic research accelerates. This week, scientists published a rough map of 16,000 human genes, about one fifth of the entire set in each person's body. They expect to decipher the rest by 2005.

``New disease genes are discovered almost weekly,'' Dr. Francis Collins This article is about the geneticist. For the Pennsylvania Congressman, see Francis Dolan Collins.

Francis S. Collins (born April 14, 1950), M.D., Ph.D.
, director of the National Center for Human Genome Research, told a congressional hearing last month. ``Once a disease gene is identified, it is often only a matter of months before a diagnostic test can be made available.''

That's the good news. But Collins went on to say that ``predictive genetic testing Genetic Testing Definition

A genetic test examines the genetic information contained inside a person's cells, called DNA, to determine if that person has or will develop a certain disease or could pass a disease to his or her offspring.
 of healthy individuals raises many questions about benefits and risks. A particular concern is the fear of losing jobs or health insurance because of a genetic predisposition genetic predisposition Molecular medicine The tendency to suffer from certain genetic diseases–eg, Huntington's disease, or inherit certain skills–eg, musical talent  to a particular disease.''

At the hearing, Rep. Cliff Stearns, R-Fla., told of a California father who couldn't get health insurance for his children because his wife died of an inherited heart defect.

In the Georgetown University survey, 25 percent of the respondents said they believed they or a family member had been refused life insurance; 22 percent believed they were refused health insurance, and 13 percent believed they were denied or let go from a job. Some said they suffered discrimination in more than one category.

Some people said they refuse to take genetic tests, or don't inform employers or insurers about the results for fear they will be ill-treated.

Lapham said the respondents were volunteers affiliated with genetic disease support organizations, and therefore the findings apply only to this group, not to the population at large.

Nevertheless, the results are likely to add to the pressure for government regulations forbidding genetic discrimination.

The Kassebaum-Kennedy health reform bill signed by President Clinton in August forbids health insurance companies from charging higher premiums or denying coverage to healthy individuals on the basis of genetic tests.

The law has weaknesses, however. It only covers employed people who belong to group health insurance plans. It does not prevent employers from asking job applicants about genetic tests.

``It's a good first step in the right direction,'' said Martha Volner, of the Alliance of Genetic Support Groups, which provided the volunteers for the survey.

In addition, a dozen states have passed laws aimed at preventing the abuse of genetic information by insurers.
COPYRIGHT 1996 Daily News
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1996, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Publication:Daily News (Los Angeles, CA)
Date:Oct 25, 1996

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