AFFIRMATIVE – EMPLOYMENT – GENETIC SCREENING

AFFIRMATIVE — EMPLOYMENT — GENETIC SCREENING — SIGNIFICANCE 291

GENETIC SCREENING IS USED TO DISCRIMINATE

HOW GENETIC SCREENING CAN COST SOMEONE THEIR JOB

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

FOR those who fret about such things, the scenario runs like this: employee X goes for a senior management job with a fat salary and all the usual additional perks.

The interview goes fine and everything is looking rosy, but the employer wants to do some basic healthcare checks, just to be sure about the person they are taking on. The company arranges a pre-employment medical.

There are questions about lifestyle, general health, major illnesses in the family and then a request for a simple mouth swab.

The next thing X knows is that he has been turned down for the job. He wants to know why. The employer says he cannot discuss it.

X is stunned. He pleads to be filled in. The employer relents and tells him the inoffensive mouth swab in fact revealed details of a genetic predisposition to cancer. The employer had decided that he was too risky, too expensive a prospect. Good luck for the future.

This is made up. But it is very easy to do and there are no laws to stop it.

THOSE AT GENETIC RISK ARE ALREADY BEING DISCRIMINATED AGAINST

Wendy Wagenheim, legislative director of the American Civil Liberties Union of Michigan, The Detroit News January 27, 2000, SECTION: Opinion; Pg. Pg. A13 TITLE: Michiganians need strong genetic privacy // acs-EE2001

We have already encountered the more pernicious and discriminatory use of genetic information by both employers and the health insurance industry. In a 1996 Georgetown University study of 332 families participating in genetic disease support groups, 22 percent of the respondents stated they were refused health insurance and 13 percent said they were terminated from their jobs because of the perceived risks attributed to their genetic status.

MEDICAL RECORD DISCLOSURE CAN LEAD TO JOB DISCRIMINATION

Amy Goldstein, The Washington Post, August 23, 1999, SECTION: A SECTION; Pg. A01 TITLE: Long Reach Into Patients' Privacy; New Uses of Data Illustrate Potential Benefits, Hazards // acs-EE2001

On the other side of the debate, civil liberties advocates and specialists in privacy issues warn that the widening access to patients' records holds distinct dangers. For instance, they predict that the burgeoning ability to test people for a genetic predisposition to certain diseases opens them to possible discrimination in getting health insurance or jobs.

GENETIC JOB DISCRIMINATION IS A GROWING THREAT

ARMOND BUDISH, The Plain Dealer March 26, 2000, SECTION: LIVING; Pg. 7L TITLE: HAVING THE WRONG GENES CAN COST YOU YOUR JOB // acs-VT2001

Picture this situation: Even though your employment evaluations always have been good, you have just been fired. Off the record, you're told it's because of your health. But how can that be - your health is fine. The answer lies in your genes.

Your employer obtained the results of a genetic test that indicated you have a predisposition for cancer. And the employer doesn't want to be burdened with higher medical insurance costs if you do develop the disease.

Is this something out of a science-fiction movie? Unfortunately, the answer is no. Genetic discrimination poses a growing threat to the privacy of employees and consumers.

EMPLOYERS ARE ASKING GENETIC QUESTIONS AND USING THEM TO DISCRIMINATE

ROBERT PEAR; The Plain Dealer, February 9, 2000, SECTION: NATIONAL; Pg. 11A TITLE: CLINTON MOVES TO PROTECT WORKERS' GENETIC INFORMATION // acs-EE2001

Several studies in scientific journals suggest that many people have been asked questions about genetic diseases on job applications, and some workers report that they have been denied jobs or dismissed from jobs because of genetic conditions in the family.

GENETIC RECORDS SHOULD NOT BE USED TO DISCRIMINATE AGAINST ANYONE THE KANSAS CITY STAR , February 29, 2000, SECTION: OPINION; Pg. B6, TITLE: Genetic privacy must be protected // acs-EE2001

If such vulnerabilities become part of one's medical record, should insurance companies or employers have access to it? Clinton is right to say that this information should not be the basis for discrimination against anyone.

INSURERS AND EMPLOYERS WILL USE GENETIC INFORMATION AGAINST US

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

Scientists expect by 2005, or sooner, to uncloak the most profound secrets of our bodies -- the 100,000 or so bits of cellular material called genes that pretty much make us who we are.

That brave new world of knowledge is expected to help us understand and stave off serious diseases.

It's also not hard to imagine a downside: Such information could be used against a person by insurers and employers.

That's because knowing someone is susceptible to Huntington's disease or breast cancer could be invaluable to a health maintenance organization seeking to curb costs. Same for a prospective employer who'd pay the bill for health insurance.

GENETIC TESTING PERPETUATES EMPLOYMENT DISCRIMINATION

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

The potential for discrimination in the employment context is another concern. Many employers already screen job applicants for particular medical conditions, and some have started to require genetic tests. n31 One scholar has recently observed that "American firms are engaging in... a frenzy of inspecting, detecting, selecting, and rejecting.... Employers' use of genetic testing is likely to increase as tests become more widely available." n32

GENETIC TESTING HAS THE POTENTIALLY OF KEEPING A WHOLE CLASS OF PEOPLE UNEMPLOYED

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

It is quite conceivable that insurers and employers who wish to maximize profits will use genetic screening to identify and "weed out" individuals who have a higher probability of developing a serious disease [*583] that may incur high medical expenses. For example, it may be economically feasible for employers to determine which genetic diseases are the most expensive, screen all applicants for genetic markers associated with these diseases, and then refuse to hire anyone who shows a higher than average predisposition for these conditions. n33 Insurance companies may behave in a similar fashion, screening potential clients and refusing to insure those who are a higher risk based on genetic tests. n34

GENETIC INFORMATION IS HIGHLY PERSONAL AND POWERFUL AND COULD BE USED TO DISCRIMINATE AGAINST INDIVIDUALS

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

The sequence of a person's DNA may be likened to a future diary in that it can be a source of highly personal information concerning an individual's current and future health. n43 The information that may be obtained is powerful and uniquely personal since: (1) it contains information that the individual himself may not want to know but that others such as insurers or employers may wish to discover; (2) valuable information may be obtained about the individual's family members; (3) future advances in genetic tests may allow a sample to be a continuing source of new information; and (4) those labeled genetically inferior have historically been subjected to discrimination. n44

GENETIC DISCRIMINATION IS A MAJOR PROBLEM

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

The opportunity for genetic discrimination is a cause for concern by many people. A recent study of individuals with one or more relatives with a genetic disorder found that thirteen percent believed that they were denied a job or fired because of their family genetic history, seventeen percent chose not to reveal genetic information to their employers, and ten percent chose not to undergo genetic testing because of fear of discrimination. n35

GENETIC INFORMATION WILL PERPETUATE INHERENT INEQUALITY AND UNEMPLOYMENT

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

Advances in the knowledge of human genetics hold great promise for improving health by vastly improving our ability to detect, and perhaps cure, many deadly diseases. However, many in our society fear that this technology could also "create an underclass of biologically unemployable and uninsurable" citizens. n29 This fear of biological stigmatization is not without foundation. According to one study, as many as twenty-two percent of people who are considered at-risk for genetic disorders are denied insurance coverage based on this label. n30

GENETIC TESTING INCREASES THE LIKELIHOOD OF DISCRIMINATION IN THE WORKPLACE

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," EE2001-hxm lxnx

In 1986, the federal government initiated studies to determine the viability of a large-scale project aimed at mapping and sequencing n13 all of the genes in a human being. n14 Based on these studies, Congress formally began the Human Genome Project n15 under the auspices of the Department of Energy and the National Institutes of Health. n16 This project is now an international undertaking that includes research being done in countries including the United States, the former Soviet Union, Japan, France, Italy, and the United Kingdom. n17 As a result of this international effort, many markers n18 for genetically inherited conditions have been identified, thereby leading to genetic tests for many diseases. n19 As the research progresses, many more markers are expected to become available. Although this information will undoubtedly prove valuable for the prevention and treatment of many diseases, it also increases the potential for its discriminatory use by employers and insurers. The Working Group on Ethical, Legal and Social Implications ("ELSI"), a branch of the Human Genome Project, has identified a number of issues raised by the developing technology, including employment discrimination, access to health insurance, and the privacy of genetic records. n20

GENETIC INFORMATION IS A PRIVACY ISSUE THAT CAN FOSTER EMPLOYMENT DISCRIMINATION

By examining the sequence of an individual's genes, it is now possible to calculate the statistical probability that a particular person will develop any number of serious illnesses. As demonstrated by the examples above, the use of genetic markers to "predict" future illness in a currently asymptomatic n7 person creates the opportunity for employment discrimination based on the misuse of this information. The implications for employment law arise in two contexts: access to health insurance (as part of an employee benefit plan) and employment discrimination (affecting hiring, firing, or other conditions of employment). Each of these contexts implicates privacy issues, raising questions about how much access to genetic information employers and insurers should be entitled to receive and to act upon.

AS TESTING COSTS FALL, THE RISK OF GENETIC DISCRIMINATION RISES

With the cost of testing rapidly declining and the number of conditions that can be tested increasing, the potential for genetic discrimination is likely to increase. As concerned as employers are about the growing cost of providing health insurance for their employees, it is reasonable to assume that employers will be interested in accessing genetic information.

ABILITY TO IDENTOIFY PEOPLE WITH GENETIC DISORDERS COMES BEFORE MEDICAL TREATMENT, THUS SETTOING THE STAGE FOR NEEDLESS DISCRIMINATION

In many cases, the ability to identify individuals based on their genetic characteristics has come about before the medical profession has the ability to use this information for treatment. While genetic information may indicate a predisposition or susceptibility to future illness, it does not necessarily indicate when or if someone will develop symptoms or how severe the symptoms will be. Genetic information will not always diagnose disease. In fact, many people who test positive for genetic mutations associated with certain conditions will never develop those conditions. Many identified as having a hereditary condition are, indeed, healthy.