GENETIC DISCRIMINATION IN THE WORKPLACE

INTRODUCTION
QUESTIONS AND ANSWERS
CURRENT LEGAL STATUS
MODEL BILL
SUPPORTING ORGANIZATIONS
BIBLIOGRAPHY

INTRODUCTION

"Progress is like a storekeeper. You can have anything you want, but you have to pay the price. You can have the airplane, but the birds will lose their wonder, and the clouds will smell of gasoline." Clarence Darrow

Our collective knowledge of human genetics and its impact on our health is growing at an astonishing rate. The federally funded Human Genome Project has identified hundreds of specific genes and their role in our development and has announced jointly with Celera Genomics the completion of a working draft of the sequence of the human genome.

In the long run, this knowledge may be a blessing. Many of the diseases which plague humanity have genetic origins, including Alzheimer's, Huntington's, and many forms of cancer. Better understanding of our genetic make-up may ultimately make it possible to find cures.

The immediate consequences of this development, however, may be a curse. There will be a period of years during which we are able to identify which individuals will ultimately contract a genetic illness (or be at increased risk), but we will be unable to prevent or cure the disease.

These individuals will then become victims of discrimination. Many employers will not hire them because these employers wish to avoid paying for their medical care or investing in training these individuals for a long future with the company. Companies also will subject these people to discrimination when they are attempting to obtain life or health insurance.

One example of the misuse of genetic information involved a social worker who had an exemplary record. Her employer fired her after finding out that she was at-risk for Huntington’s disease. The information arose during an in-service training session about caring for persons with Huntington’s disease. The social worker related that she had someone in her family with the disease. Prior to the in-service she was given three promotions and outstanding performance reviews. Subsequently, she received a poor review and her supervisor was unable to give her examples of why her performance was considered poor. Shortly thereafter, she was fired. A co-worker told her that the employer was afraid she would develop Huntington’s disease.

Most, if not all, individuals have some mutation in their genetic make-up. Once the researchers expand our knowledge base, we will all be targets for genetic discrimination and invasions of our privacy. When people feel as though they are going to be a target of discrimination, they will be much less likely to get tested. This, in turn, can jeopardize the public’s health.

Furthermore, the ability to get genetic information about employees should not be a substitute for adhering to strong standards for workplace safety and cleanliness. Nobody wants employers to use witch hunts in lieu of making sure that the workplace is as clean as possible. Again, it is in the public’s best interest that people be tested. If people must fear that the test results will be used against them, they are not likely to be tested.

As the cost of testing declines and the number of conditions that can be tested for increases, genetic testing and therefore, genetic discrimination may become as common as drug testing is today. And employers can often obtain and misuse genetic information about their employees without testing themselves. We need to take steps now to prevent this discrimination.
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QUESTIONS AND ANSWERS:

If I have a genetic mutation or disease marker does that mean I will get a disease?

Not necessarily. Scientists have not shown that every genetic difference in humans is related to a disease. In fact, science has revealed that it is genetic diversity that has sustained the human race over the centuries and our genetic diversity should be celebrated.

If I have a genetic mutation or a disease marker, can a work environment hasten the onset of a condition?

No conclusive answer is available. It is possible that in some cases the condition which creates the higher risk may be genetically linked. However, no firm evidence of this exists, at the present time. Moreover, even if some individuals are found to be at a higher risk, there still are no genetic tests which can distinguish between general environmental influences on our genes and the influence of known workplace hazards.

If an employee has a gene mutation that would put him or her at increased risk in a particular industrial atmosphere, isn't their employer entitled to know, and to keep them out for their own safety?

No. In a perfect world, no one would take a job which might jeopardize their health. In the real world, however, people often have to choose between a job which is perfectly safe and one which pays enough to support their family. The least we can do in such a difficult situation is let the employee make their own decision. Furthermore, the Americans With Disabilities Act rejects the paternalistic approach and generally prohibits employers from making decisions based on conditions that are irrelevant to one’s ability to perform a particular job.

Are some genetic traits associated with certain groups of people?

Yes. Sickle cell trait occurs most frequently in blacks. An inherited deficiency in the enzyme glucose-6-phosphate dehydrogenase (G-6-PD) is concentrated among blacks and those of Mediterranean descent. Another genetic deficiency known as serum alpha1-antitrypsin deficiency (SAT) is most prevalent in individuals of Northern European ancestry. Double mutant copies of CCR5 are most common in whites.

If I am tested privately, can my employer legally find out the information?

Yes. The ADA prohibits employers from making any medical investigation of applicants until a conditional offer of employment is made. Once the conditional offer is made, however, there are no limits on an employer’s medical investigation. It is entirely legal for an employer, post-offer, to require an applicant to disclose their entire medical history, including any genetic tests they may have taken privately.

INSURANCE ISSUES

Although this legislative kit deals with genetic issues in the workplace, the subject of insurance always seems to enter into the discussion. Thus, the following will sensitize you briefly to the main insurance issues.

In the future, society and the insurance industry may have competing interests with respect to genetics. Society wants everyone to be able to access insurance on equal footing. The insurance industry wants to be able to write insurance based upon actuarially sound information. When genetic testing is able to predict the future with certainty, these two interests may compete.

Insurance presents other unique situations. The first is adverse selection. This is a phenomenon where people who know they will soon suffer a loss choose to purchase far more insurance than they otherwise would. If the insurance is sold at standard rates, this can create severe financial problems for the insurer.

Adverse selection is not a major problem with respect to health insurance. The vast majority of medical care is not discretionary; people do not need more medical care because they have insurance. Health insurers can allocate the total cost of health care among all their subscribers (called risk pooling). While the costs for individuals who use large amounts of care will exceed the premiums they have paid, the insurer will recover these loses from the premiums of those who use less.

Life insurance, however, is a different matter. How much life insurance a person purchases is completely discretionary and has no upper limit. A person who just learned that they have a terminal illness has an incentive to purchase several million dollars of life insurance if they can do so at standard rates. Not only is this a huge loss to the insurer, but it cannot be recaptured from the other policyholders because the total cost is virtually unlimited. The best answer to this problem may be to require insurers to offer a limited amount of coverage to everyone at standard rates but allow them to charge a risk adjusted rate for policies in excess of the limit.

Lastly, the insurance industry will attempt to limit these laws. This has been done in a number of ways including limits so that these laws only protect people who carry the gene, but have not yet manifested any disease; limits so that these laws only pertain to the writing of a new policy, not the raising of rates or canceling of an existing policy; and limits on the private right of action.
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CURRENT LEGAL STATUS OF WORKPLACE GENETIC DISCRIMINATION

The most important law concerning genetic discrimination is the Americans with Disabilities Act. The ADA prohibits employers from discriminating against those with "physical or mental impairments which substantially limit a major life activity" (or those that have a record of or are regarded as having such an impairment) so long as their condition does not make them incapable of doing the job.

While the ADA does not specifically discuss genetic conditions, most experts believe that it prohibits some genetic discrimination. It is clear that the ADA prohibits employment discrimination after a genetic disease has expressed itself. Less certain is the situation where a person has a particular mutation, but as yet, has not been affected by the mutation. The EEOC has taken the position in its interpretative regulations that such a person is covered against discrimination when that discrimination is due to the perception that they are predisposed to become ill. This interpretation, however, has not been tested in court.

One situation that the ADA regulations do not address is when a person is an unaffected carrier for a recessive or X-linked mutation. This person carries a mutation, but never will manifest a genetically based disease. However, if this person mates with another person who is a carrier, there is a 25% chance that the offspring will carry a mutation that may result in the manifestation of an illness. The ADA is silent on how to treat such a carrier.

The other gap in the scope of protection under the ADA concerns people who do not have a genetic mutation, but who have a family member who does. Employers who provide medical insurance for employees’ dependents have a financial incentive to discriminate in such situations. It is unclear at best, however, whether this type of discrimination violates the ADA.

The most serious flaw in the ADA, however, is that it does not prevent employers from obtaining genetic information; it only prevents them from using the information. Under the ADA, an employer who has made a "conditional job offer" is free to conduct unlimited medical investigations of the applicant. This can include collecting information that the employer cannot legally use. This loophole allows employers to learn about an applicant's genetic status without violating the ADA. Once an employer knows that a potential employee is likely to require expensive medical care, the employer can find some excuse not to hire that person. While employees will sometimes be able to correct this injustice in court, the right answer is to prevent it from ever happening. This can only be accomplished by keeping genetic information out of the hands of employers.

OTHER FEDERAL LAWS

National Labor Relations Act (NLRA)

Under the NLRA, health and safety matters are mandatory subjects of collective bargaining. This offers some protection to employees who belong to unions. Even in a union shop, however, the NLRA will do nothing to protect applicants.

Title VII of the Civil Rights Act of 1964

Title VII should prohibit genetic discrimination in the few cases where it would have a disparate impact along the lines of race, gender, religion, or national origin.

Health Insurance Portability and Accountability Act of 1996

The Health Insurance Portability and Accountability Act of 1996 (HIPAA or Health Care Law) already provides some federal protection against genetic discrimination when an employer provides medical insurance. It does so by putting limitations on what can be considered a preexisting condition. The statutory definition of preexisting condition is any physical or mental condition for which medical advice, diagnosis, care, or treatment was recommended or received within the six-month period ending on the enrollment date. §9801(a)(1). Furthermore, genetic information cannot be treated as a preexisting condition unless there has been a diagnosis of the condition to which the genetic information relates. §9801(b)(1)(A) and (B).

STATE LAWS

The states’ laws regarding the workplace are characterized by three broad types. First there are the states that prohibit discrimination based on the trait for a specific disease. These states include Florida, Louisiana, and North Carolina. Second, states such as Arizona and Illinois prohibit discrimination based upon genetic status. Lastly, there are states that prohibit both discrimination based upon genetic status and prohibit testing to determine that status. These states include Iowa, New Hampshire, New Jersey, New York, Oregon, Rhode Island, and Wisconsin.

Many state statutes have fallen prey to the same difficulty as the ADA. They prohibit discrimination but not the gathering of the information. Others prevent only discrimination based upon the results of genetic testing rather than genetic information which is currently the more likely form this type of discrimination takes. Still others have a definition of genetic information so limited as to render them relatively ineffective.

WHAT IS NEEDED

The right answer is to allow employers to collect genetic information about employees only when it is relevant to the employee’s ability to do a particular job. This would eliminate not only genetic discrimination, but other forms of unfair exclusion from the workforce. It also would offer better protection to employees' privacy. Even where an employer does not discriminate, it is wrong for the employer to collect information about an employee’s medical conditions when the information is not job related.

The best way to accomplish this would be to amend the ADA. The prospects of accomplishing this, at the present time, are poor at best.

Individual states or the federal government, however, can pass legislation to protect their citizens. The ADA does not preempt such efforts; it specifically authorizes states to pass more protective legislation.
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A DISCUSSION OF IMPORTANT LANGUAGE AND CONCEPTS

It is often possible to pass laws restricting employers' access to genetic information. Genetic testing and the resultant discrimination strikes a nerve with the public and their elected representatives, and very few employers currently have any interest in this information.

The important thing to watch where you are undergoing work on a genetic discrimination bill is the definition of genetic information. There are many ways in which information about an employee’s genetic make-up can be inferred without directly doing a DNA test. For instance, if you know that a woman’s mother had breast cancer, you can infer that the likelihood of the woman herself getting breast cancer is higher than the average woman.

An example of a very narrow, yet comprehensive sounding definition might go something like this: “The term ‘genetic information’ means information from a human DNA sample about molecular genotype, information from mutation analysis, or information about nucleotide sequence of a gene.” Such a definition sounds comprehensive, but would not prevent an employer from making an inference based upon family history. Furthermore, it will not cover technologies that emerge in the future for DNA analysis.

The core language for this approach is:

A. Definition:

Genetic information- Any information about genes, gene products, and inherited characteristics that may derive from the individual or a family member. This includes, but is not limited to, information regarding carrier status, information regarding an increased likelihood of future disease or increased sensitivity to any substance, information derived from laboratory tests that identify mutations in specific genes or chromosomes, physical medical examinations, family histories, inquiries, tests of gene products, and direct analysis of genes or chromosomes.

B. Substantive:

(1) No employer may directly or indirectly collect or have access to any genetic information concerning an employee or applicant for employment, or member of their family, unless the employer can demonstrate that the information is job related and consistent with business necessity.

(2) No employer shall discriminate against any employee or applicant for employment or any member of their family because of any genetic information about that individual or a member of their family unless the employer can demonstrate that the information is job related and consistent with business necessity.
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THE NATIONAL WORKRIGHTS INSTITUTE MODEL STATUTE

SECTION 1. DEFINITIONS

IN THIS ACT:

A. "Employee" means an individual who works for hire, including an independent contractor or an individual employed in a supervisory, managerial, or confidential position.

B. "Employer" means a person, including [this state, a political subdivision, a municipal corporation, or] any [other] governmental subdivision, agency, or instrumentality, that employs people or an employment agency, labor organization, or joint labor-management committee.

C. "Genetic information" means any information about genes, gene products, and inherited characteristics that may derive from the individual or a family member. This includes, but is not limited to, information regarding carrier status, information regarding an increased likelihood of future disease or increased sensitivity to any substance, information derived from laboratory tests that identify mutations in specific genes or chromosomes, physical medical examinations, family histories, inquiries, tests of gene products, and direct analysis of genes or chromosomes.

D. "Job related and consistent with business necessity" means the condition in question renders the individual unable to perform the essential functions of the position that such individual holds or desires. This includes situations in which the individual poses a direct threat to the health or safety of others in the workplace, but not situations in which only the individual is at risk.

SECTION 2. SCOPE

This act does not displace or extinguish rights or claims of an employee against an employer arising under state or federal statutes or administrative regulations having the force of law, or local ordinances valid under state law, a collective bargaining agreement between an employer and a labor organization, or provisions of an express oral or written agreement relating to employment that does not violate this act. Those rights and claims may not be asserted under this act except as otherwise provided in this act. The existence or adjudication of those rights or claims does not limit the employee’s rights or claims under this act.

SECTION 3. PROHIBITIONS

A. No employer may directly or indirectly collect or have access to any genetic information concerning an employee or applicant for employment, or member of their family, unless the employer can demonstrate that the information is job related and consistent with business necessity.

B. No employer shall discriminate against any employee or applicant for employment or any member of their family because of any genetic information about that individual or a member of their family unless the employer can demonstrate that the information is job related and consistent with business necessity.

C. As used in subsection B, the term "discriminate" means differential treatment in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment. This includes the following:

1. limiting, segregating, or classifying a job applicant or employee in a way that adversely affects the opportunities or status of such applicant or employee because of the genetic information of such applicant or employee;
2. participating in a contractual or other arrangement or relationship that has the effect of subjecting an applicant or employee to the discrimination prohibited by this statute. Such relationships include, but are not limited to, a relationship with an employment or referral agency, labor union, an organization providing fringe benefits to an employee or an employees family members, or an organization providing training and apprenticeship programs;
3. utilizing standards, criteria, or methods of administration-
   1. that have the effect of discrimination on the basis of genetic information;
   2. that perpetuate the discrimination of others who are subject to common administrative control; or
   3. that screen out or tend to screen out employees or applicants for employment, based on genetic information;
4. excluding or otherwise denying equal jobs or benefits to an employee or applicant for employment because of the genetic information of an employee or applicant for employment with whom the employee or applicant for employment is known to have a relationship or association.

The biggest potential for trouble in this area of legislation is when insurance provisions are included in a bill with workplace provisions. The interests of the insurance industry are well developed. As discussed above, the industry does not directly concern itself with the same issues that arise in the workplace. Thus, for the sake of clarity and economy you may do better by first concerning yourself with workplace legislation and then with the insurance legislation.
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ORGANIZATIONS SUPPORTING LEGISLATION TO PREVENT DISCRIMINATION/PRIVACY INVASIONS BASED UPON GENETIC TESTING

Coalition for Genetic Fairness
1875 Connecticut Avenue, N.W., Suite 710
Washington, D.C. 20009
(202) 986-2600

American Civil Liberties Union
122 Maryland Avenue, NW
Washington, D.C. 20002
(202) 544-1681

Alpha-1 Association
8120 Penn Avenie S.
Minneapolis, MN 55431-1326
(781) 329-4187

Hadassah
5100 Wisconsin Ave., Ste. 250
Washington, D.C. 20016
(212) 303-8136

National Society of Genetic Counselor, Inc.
233 Cantebury Ln.
Wallingford, PA 19086-6617
(703) 698 -7355

National Action Plan on Breast Cancer
U.S. Public Health Service’s Office on Women’s Health
Department of Health and Human Services, Room 718F
200 Independence Avenue, S.W.
Washington, DC 20201
202-401-9585

Genetics, Ethics, Policy Consultants
317 Lamartine Street
Boston, MA 02130
617-522-0845

National Human Genome Research Institute
National Institutes of Health
Building 31, Suite 4B09
31 Center Drive
9000 Rockville Pike
Bethesda, MD 20892
301-402-0911

African American Breast Cancer Alliance
666 Dayton Avenue
St. Paul, MN 55104
612-225-0867

Alliance of Genetic Support Groups
35 Wisconsin Circle, Suite 440
Chevy Chase, MD 20815-7015
301-652-5553

Council for Responsible Genetics
5 Upland Road, Suite 3
Cambridge, MA 02140
617-868-0870

National Cancer Institute
National Institutes of Health
Building 31, Room 3A44
31 Center Drive MSC 2152
Bethesda, MD 20892-2152
301-496-5964