GENETIC DISCRIMINATION

Abby StroupAnh-Thu TruongBrittany Ribordy

Duc Huynh

Discrimination Demonstration

Alcoholism- drink signs (middle)

Arthritis- taped fingers (front)

Cancer- black arm band (back)

Heart Disease- purple, pink, & red hearts (back)

Hearing Loss- ear plugs (middle)

Infertility- pacifier necklace (middle)

Obesity- desert necklace (front)

What is Genetic Discrimination?

Genetic discrimination describes the different treatment of individuals or their relatives based on their actual or presumed genetic differences as distinguished based on having symptoms of a genetic – based disease.

Genetic Discrimination A discrimination, prejudice and stigma arising

from knowledge or study of genetic information

It differs from other forms of discrimination based on race, gender, ethnicity, religion or physical characteristics in that it can have no physical manifestations

It affects family units and reproductive options, and usually elicits stereotypic responses including genetic determinism and inevitability.

USA Today The rise of genetic testing is an off spring of

efforts such as the Human Genome Project to “map” human DNA,the building block of life and wellspring of individuality.

Increasingly, genes that cause specific traits are being located, and some have been used to deny health-care coverage. What seems to be lost in the debate, however, are the consequences assigning a genetic definition of the word “normal”.

USA Today

In all likelihood, this will become one of the defining issues of the next few generations.

If science enables us to locate so-called “defective” genes, and individuals are held accountable for them, three successive wrongs would likely occur:

1. Science genetic makeup is determined before birth, gene-test discrimination would hold people accountable for circumstances completely beyond their control.

USA Today

2. If society as a whole is faced with widespread genetic discrimination, people will eventually demand a way to screen out all of the “undesirable” genes, thereby eliminating the very diversity that makes humans unique among living creatures.

USA Today

3. If a genetic trait can be used to deny health coverage, it is a small step to assign a genetic blame-factor that can be used in court to shield people from consequences of their actions. At that point, the criminal justice system and out quality of life as a whole would collapse as rapes, drunken driving, murder and a host of other social ills are dismissed on the basis of genetic predetermination.

USA Today

Scientific research should continue, but the cost of ignoring genetic shortcomings in public policy issues is far smaller than the price of genetic discrimination, which would ultimately lead to genetic manipulation, loss of social diversity and abdication of personal responsibility.

HistoryEarlier in this century, the impulse to

discriminate on genetic grounds stimulated groups to claim heredity privileges and engendered laws restricting reproduction, limiting immigration or forcing sterilization, and the holocaust.

History Although, some countries still use genetic

discrimination to the fullest, most countries, as the United States, use more subtle forms. These include discrimination in:

1. Healthcare

2. Employment

3. Social entitlements (insurance)

4. Education

5. Governmental services

6. Adoption

7. Privacy

Where is genetic discrimination mostly occurring?

UNITED STATES

History

Only 12 states in the U.S. have laws that protect employees from genetic discrimination. They are: California, Connecticut, Illinois,

Iowa, New Hampshire, New Jersey, New York, North Carolina, Rhode Island, Texas, Wisconsin, Oregon.

Rules and Regulations(Oregon)

1995Genetic test: a test for determining the

presence or absence of genetic characteristics in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to diagnose a genetic characteristic.

Rules and RegulationsProhibits health insurers from utilizing

genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, or affect the terms and conditions of health insurance policies.

Provides for informed consent and privacy protection of genetic information.

Rules and Regulations(Oregon)

1997 Provides that genetic information is uniquely

private and personal information that generally should not be collected retained or disclosed without the individual’s authorization.

Provides that an individual’s genetic information and DNA sample are the property of the individual except when the information or sample is used in anonymous research.

Rules and RegulationsProvides that a person does not

interfere with, infringe upon, misappropriate or otherwise damage an individual’s property by obtaining, testing, retaining, disclosing or providing an individual’s genetic information or DNA sample solely for anonymous research.

Prohibits the retention of another individual’s genetic information or DNA sample without authorization unless retention is for anonymous research.

Rules and Regulations

Provides for the prompt destruction of DNA samples in research projects unless for an anonymous research project.

Myths And FactsMyth: Genetic testing is an efficient way

to predict diseases.Fact: While some tests can accurately

detect diseases that will occur, most tests cannot detect when the individual will start developing symptoms or how severe it will be.

Myths And Facts

Myth: Genetic testing is not a serious issue in the workplace.

Fact: It is on the rise! In 1982 a federal government survey found

that 1.6% of companies were using genetic testing for employment.

In 1997, 6-10% were found to be conducting the tests.

Myths And Facts Have there been cases of discrimination in the

workplace? Yes, in a survey of nearly 1,000 individuals

who were at risk for genetic conditions. Over 22% reported that they had experienced some form of discrimination based on their risk status.

Where is genetic discrimination likely to

occur?

WorkplaceHealth InsuranceMedical IndustryEducation

Workplace Two types of genetic testing can occur in the

workplace: genetic screening and genetic monitoring. Genetic screening examines the genetic makeup of employees or job applicants for specific inherited characteristics. It can also be used to detect the presence of genetically determined traits that render an employee susceptible to a certain disease if exposed to specific environmental factors or substances that may be present in the workplace.

Workplace Genetic monitoring concludes whether an

individual’s genetic material has changed over time due to workplace exposure to hazardous substances. Evidence of genetic changes in a population of workers could be used to target work areas for increased safety and health precautions and to indicate a need to lower exposure levels for a group exposed to a previously unknown hazard. The ultimate goal of genetic monitoring is to prevent or reduce the risk of disease caused by genetic damage.

Workplace Based on genetic information, employers may

try to avoid hiring workers who they believe are likely to take sick leave, resign, retire early for health reasons, file for workers’ compensation, or use health care benefits excessively. This is a danger to everyone because we all have at least one genetic condition that we are currently unaware of.

Health insurance

Insurers also face strong economic incentives to identify individuals perceived to be at increased risk for disease in the future. Starting in the 1980’s, blood testing of life insurance applicants became widespread, as did price discrimination based on the results. Today, some insurers have as many as nine classes of preferred rates based on factors such as blood pressure, cholesterol levels, age, sex, and smoking habits.

Health Insurance No insurance company yet offers discounts to

the “genetically fit,” but many industry observers believe it’s only a matter of time before some renegade firm makes the pitch. “Your genetic profile may qualify for the lowest insurance rate ever offered? You don’t have to subsidize anyone else’s inferior genes again! DNA Life Insurance Company introduces Immortal Life, the policy for the superior man or woman with unsurpassed gene fitness.”

Medical IndustryDiscrimination has also occurred when

medical professionals counseled individuals about child bearing by urging prenatal diagnostic testing or telling them they should not have children at all. Similarly, some adoption agencies have unfairly treated prospective parents with a genetic condition by refusing adoption or assuming they should adopt only children at risk of inheriting a disability.

EducationA new found interest has been the

connection between genetics and low test scores in public schools. Educators are now looking for problems in the children, rather than rethinking the education system. Parents can refuse diagnostic tests, however, they are essential if you want your children to receive practical help. In the end, the results of these genetic tests will most likely become an excuse for learning institutions to hide behind.

Some samples of Genetic Discrimination

As genetic testing becomes less expensive and more widespread, reports of discrimination are growing and employers are increasingly seeking information about their employees’ health and genetic makeup

In a 1995 survey of people with a known genetic condition in their family, 22% reported being denied health insurance because of their genetic status, whether or not they were already sick.

A woman found to carry a gene for cystic fibrosis was told that neither she nor and children that she might have would be covered by health insurance unless it was determined that her husband did not carry the cystic fibrosis gene.

Two employees at the telecommunications company in Boston say that they were fired after refusing to provide hair samples for company-mandated testing. (due to their fears of genetic information)

GENETIC DISCRIMINATION Is A Real Problem, with Real Victims.

Terri Seargent, whose brother died at 37 year-old to ALPHA-1 Antitrypsin

Deficiency, was fired on December 20th, 1999 due to her ALPHA-1 disease.

What is Alpha-1 Antitrypsin Deficiency? Alpha-1 was first described in 1963 by investigators at

Malmo General Hospital in Sweden. It is an inherited condition predisposing affected individuals

to lungs and liver of inflammatory proteases. The lung disease of Alpha-1 leads to premature death in

most individuals of all ages, particular severe in newborn It is a major undiagnosed killer and the risk factors that lead

to the organ injury associated with this genetic condition aren’t clearly understood.

Although virtually unknown by the general public and under diagnosed by the medical community, approximately 100,000 individuals in the United States have the serve form of the deficiency and an additional 5 million individuals carry at least on abnormal gene.

Terri Seargent, the most obvious case Started working in November 1996. First annual review in 1997 with a perfect scores

& extremely high praises. Salary increased, received an end-of-year bonus. In December 1997, company insurance program

were changing employees would be partially self-insured.

In April 1999, Terri had some tightness in her chest, went to see doctor, and told the doctor about her brother dying due to Alpha-1.

After the blood test, she is an Alpha-1 person.

Terri Seargent, the most obvious case In October 1999, she started her treatment.

Through all of this, she had not exceeded her personal time or vacation for the year.

She is very healthy, no one would know that she is receiving treatment or having ALPHA-1.

She again got 10% raise and became an integral part of the management team in the company.

In December 20, 1999. Terri suddenly had a meeting with the President and Vice-President. They told her that her services no longer needed.

Terri went to the local Human Relation Commission to file a claim, but they told her that there are no laws prohibiting such genetic disorder discrimination

Laws & RegulationsGenetic information is being generated

much more quickly than our legal and social systems can respond. While many states have now passed some form of legislation, much of it is inadequate and does not go far enough to protect the genetic privacy of individuals.

Legal Action “By signing this executive order, my

goal is to set an example and pose a challenge for every employer in America, because I believe no employer should ever review your genetic records along with your resume.” --President Bill Clinton

Federal lawsOn February 8, 2000 former President

Bill Clinton signed an executive order that bans genetic discrimination in the federal workplace. This order prohibits federal departments and agencies from using genetic information to make decisions regarding hiring, firing, and promoting federal employees.

Federal Laws

In affect, this act will… prohibit federal employers from requiring or

requesting genetic tests as a condition of being hired or receiving benefits

prohibit federal employers from using protected genetic information to classify employees in a manner that deprives them of advancement opportunities

provide strong privacy protections to any genetic information used for medical treatment and research.

Federal LawsBill Clinton also endorsed the Genetic

Nondiscrimination in Health Insurance and Employment Act of 1999, which would extend these protections to private sectors and to individuals purchasing health insurance.

Federal LawsThe Equal Employment Opportunity

Commission (EEOC) has interpreted the Americans with Disabilities Act (ADA) to cover on-the-job discrimination based on genetic information relating to illness, disease or other disorders. However, no cases have been tried in court under this act so its protection is questionable.

State Laws In addition to federal laws and regulations,

several states have developed and adopted legislation banning discrimination in health insurance and employment. Twelve states have laws prohibiting health insurers from denying health care coverage because of a genetic condition. Seven states prohibit employers from requiring genetic tests or using genetic health predictions in employment decisions. Seven other states have bills pending to protect individuals from discriminatory use of genetic information in employment practices or for insurance purposes.

References www.ramazziniusa.org www.alpha1.org www.nationalpartnership.org www.gene-watch.org/programs/GD_PP.html www.whitehouse.gov/WH/New/html/20000208.html www.nhgri.nih.gov/NEWS/discrim.html www.nhgri.nih.gov/Policy_and_public_affairs/Legislation/insure.

html www.thearc.org/faqs.discrq&a.html www.geneticalliance.org/geneticissues/executiveorder.html www.gene.ch/gentech/1997/Jul-Aug/msg00205.html