AFFIRMATIVE — EMPLOYMENT — GENETIC SCREENING — SIGNIFICANCE 289

GENETIC TESTING PROVIDES EMPLOYERS WITH UNRELIABLE AND INACCURATE DATA

JUST IDENTIFYING A GENE DOESN'T MEAN ANYTHING

Stephen Overell, THE DAILY TELEGRAPH (LONDON), February 4, 1999, SECTION: Pg. 71 TITLE: Business File: Experts agree it's time to stick the gene genie back into the bottle // acs-EE2001

Paul Debenham, managing director of University Diagnostics, a genetic testing company which offers a test for cystic fibrosis to individuals at a cost of pounds 65, agrees.

He says: "It is not as simple as identifying a gene. The question is what version of the gene. You could not do this without the support of the individual and any company that did start offering this would be shut down by the pressure."

HEALTH INSURANCE COMPANIES AND EMPLOYERS MISTAKE THE RESULTS OF GENETIC TESTING AS CERTITUDE RATHER THAN JUST PREDISPOSITIONS

Tara L. Rachinsky, J.D., University of Pennsylvania Law School, Winter, 2000; Journal of Labor & Employment Law (2 U. Pa. J. Lab. & Emp. L. 575) , "Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace "I EE2001-hxm lxnx

Testing positive for a mutation most often indicates an increased likelihood that the individual will develop a particular condition, not an absolute certainty that the individual will inevitably become ill. For example, the genetic tests currently available for BRCA1, breast and ovarian cancer, colon cancer, and Alzheimer's disease are susceptibility tests that provide only information regarding an estimated risk for developing the disease. n24 Unfortunately, the important distinction between a genetic test result indicating a predisposition to a disease, and medical data that indicates a present illness, is lost on many people. According to Dr. Francis S. Collins, Director of the National Human Genome Research Institute, "A "fundamental difference' exists between an older person who has had a heart attack and is now at risk for congestive heart failure and a twenty-five year old whose genetic tests show he is at higher risk for cancer down the road." n25 In other words, "predisposition does not equal certitude." n26 Therefore, it is unfair to deny health coverage to healthy individuals or to discriminate against them in the workplace based on a test result that suggests that they might develop a disease at some unknown point in the future. Every individual has potential errors in the sequence of his DNA. "Each of us has an estimated five to thirty serious misspellings or alterations in our DNA. Thus we could all be targets for discrimination based on our genes." n27

EVERYONE IS PREDISPOSED TOWARDS A NUMBER OF GENETIC DISEASES

The Detroit News, February 15, 1999, SECTION: Metro; Pg. Pg. D1, TITLE: Gene study raises fears for privacy: Protections proposed to ban improper use by employers, insurers // acs-EE2001

At that point, it's predicted, we'll discover that "all of us probably will have (genetic potential for) four or five diseases," said Edward Goldman, a University of Michigan Health System legal expert who headed the state commission.

MISUNDERSTANDING ABOUT HUMAN GENETICS SERVES THE BASIS OF WIDESPREAD DISCRIMINATION BASED ON GENETIC TESTING

Deron H. Brown, JD Candidate, Thomas Jefferson School of Law, Spring 2000; Thomas Jefferson Law Review, "Book Review: Privacy in the Information Age," EE2001-hxm lxnx

One concern that is unique to genetic information (as compared to general medical data) is the lack of understanding by the public and even many professionals of the difference between predisposition and illness. This problem is exacerbated by the rapid progress of the Human Genome Project (the "Project"). As the Project identifies more genetic markers, more and more individuals will be seen as having genetic "taints." A lack of understanding of the interaction between genetic and environmental causes of disease may lead to further unwarranted discrimination. n49