Genetic discrimination
Encyclopedia
Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene
mutation
that causes or increases the risk of an inherited disorder
. People who undergo genetic testing
may be at risk for genetic discrimination.
The results of a genetic test are normally included in a person's medical record
s. When a person applies for life, disability, or health insurance, in some countries the insurance company may ask to look at these records before making a decision about coverage. An employer may also have the right to look at an employee's medical records. As a result, genetic test results could affect a person's insurance coverage or employment. People making decisions about genetic testing should be aware that when test results are placed in their medical records, the results might not be kept private.
Fear of discrimination is a concern among people considering genetic testing
. Several countries have laws that help protect people against genetic discrimination; however, genetic testing is a fast-growing field and these laws don't cover every situation.
(CRG). In 1993, the Ethical, Legal and Social Implications (ELSI) Working Group of the Human Genome Project issued a report titled "Genetic Information and Health Insurance". The report recommended that people be eligible for health insurance no matter what is known about their past, present or future health status. Two years later, the ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC) jointly developed guidelines to assist federal and state agencies in preventing genetic discrimination in health insurance.
Further, the ELSI Working Group and NAPBC recommended that health insurers be prohibited from using genetic information or an individual's request for genetic services to deny or limit health insurance coverage, establish differential rates or have access to an individual's genetic information without that individual's written authorization. Written authorization, the groups said, should be required for each separate disclosure and should specify the recipient of the disclosed information.
Next, the National Human Genome Research Institute (NHGRI) and the United States Department of Energy
, acting through the ELSI Working Group, cosponsored a series of workshops in the mid-1990s on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshop participants were published in Science: (Genetic Information and the Workplace: Legislative Approaches and Policy Challenges [sciencemag.org]) magazine, the monthly journal of the American Association for the Advancement of Science.
In 2008, the New York Times
reported that some individuals avoid genetic testing out of fear it will impede their ability to purchase insurance or find a job. They also reported that evidence of actual discrimination was rare.
and Long term care insurance
.
(HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.
The next step in addressing the issue of genetic discrimination was taken by President Bill Clinton
. The President had earlier supported proposed legislation that would have banned all health plans - group or individual - from denying coverage or raising premiums on the basis of genetic information. When the legislation failed to pass Congress, President Clinton issued an executive order ( Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information) in February 2000 prohibiting agencies of the federal government from obtaining genetic information about their employees or job applicants and from using genetic information in hiring and promotion decisions.
There continues to be a high degree of interest in these topics in state legislatures. More than one hundred bills were introduced in state legislatures in 2000 alone. Some would inaugurate protection from genetic discrimination while others would modify or clarify existing legislation.
Legislation in the United States
called the Genetic Information Nondiscrimination Act
prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition
to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring
, firing
, job placement, or promotion
decisions. It was signed into law by the President on May 21, 2008.
Gene
A gene is a molecular unit of heredity of a living organism. It is a name given to some stretches of DNA and RNA that code for a type of protein or for an RNA chain that has a function in the organism. Living beings depend on genes, as they specify all proteins and functional RNA chains...
mutation
Mutation
In molecular biology and genetics, mutations are changes in a genomic sequence: the DNA sequence of a cell's genome or the DNA or RNA sequence of a virus. They can be defined as sudden and spontaneous changes in the cell. Mutations are caused by radiation, viruses, transposons and mutagenic...
that causes or increases the risk of an inherited disorder
Genetic disorder
A genetic disorder is an illness caused by abnormalities in genes or chromosomes, especially a condition that is present from before birth. Most genetic disorders are quite rare and affect one person in every several thousands or millions....
. People who undergo genetic testing
Genetic testing
Genetic testing is among the newest and most sophisticated of techniques used to test for genetic disorders which involves direct examination of the DNA molecule itself. Other genetic tests include biochemical tests for such gene products as enzymes and other proteins and for microscopic...
may be at risk for genetic discrimination.
The results of a genetic test are normally included in a person's medical record
Medical record
The terms medical record, health record, and medical chart are used somewhat interchangeably to describe the systematic documentation of a single patient's medical history and care across time within one particular health care provider's jurisdiction....
s. When a person applies for life, disability, or health insurance, in some countries the insurance company may ask to look at these records before making a decision about coverage. An employer may also have the right to look at an employee's medical records. As a result, genetic test results could affect a person's insurance coverage or employment. People making decisions about genetic testing should be aware that when test results are placed in their medical records, the results might not be kept private.
Fear of discrimination is a concern among people considering genetic testing
Genetic testing
Genetic testing is among the newest and most sophisticated of techniques used to test for genetic disorders which involves direct examination of the DNA molecule itself. Other genetic tests include biochemical tests for such gene products as enzymes and other proteins and for microscopic...
. Several countries have laws that help protect people against genetic discrimination; however, genetic testing is a fast-growing field and these laws don't cover every situation.
Public concern against discrimination
The term genetic discrimination was first coined by the Council for Responsible GeneticsCouncil for Responsible Genetics
The Council for Responsible Genetics is a non-profit NGO with a focus on biotechnology.- History :The Council for Responsible Genetics was founded in 1983 in Cambridge, Massachusetts....
(CRG). In 1993, the Ethical, Legal and Social Implications (ELSI) Working Group of the Human Genome Project issued a report titled "Genetic Information and Health Insurance". The report recommended that people be eligible for health insurance no matter what is known about their past, present or future health status. Two years later, the ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC) jointly developed guidelines to assist federal and state agencies in preventing genetic discrimination in health insurance.
Further, the ELSI Working Group and NAPBC recommended that health insurers be prohibited from using genetic information or an individual's request for genetic services to deny or limit health insurance coverage, establish differential rates or have access to an individual's genetic information without that individual's written authorization. Written authorization, the groups said, should be required for each separate disclosure and should specify the recipient of the disclosed information.
Next, the National Human Genome Research Institute (NHGRI) and the United States Department of Energy
United States Department of Energy
The United States Department of Energy is a Cabinet-level department of the United States government concerned with the United States' policies regarding energy and safety in handling nuclear material...
, acting through the ELSI Working Group, cosponsored a series of workshops in the mid-1990s on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshop participants were published in Science: (Genetic Information and the Workplace: Legislative Approaches and Policy Challenges [sciencemag.org]) magazine, the monthly journal of the American Association for the Advancement of Science.
In 2008, the New York Times
The New York Times
The New York Times is an American daily newspaper founded and continuously published in New York City since 1851. The New York Times has won 106 Pulitzer Prizes, the most of any news organization...
reported that some individuals avoid genetic testing out of fear it will impede their ability to purchase insurance or find a job. They also reported that evidence of actual discrimination was rare.
Use of genetic information by health insurers
Health insurers do not currently require applicants for coverage to undergo genetic testing. Employer-sponsored group coverage is underwritten on a group basis, rather than an individual basis. Thus, the future use of genetic information in medical underwriting is a significant potential issue only for the individual health insurance market. However, the cost of covering diagnostic genetic tests and genetic treatments is likely to be an issue for all forms of health insurance. When insurers encounter genetic information, it is subject to the same confidentiality protections as any other sensitive health information. Because of their long-term nature, genetic information is a potentially much more significant issue for individually purchased Disability insuranceDisability insurance
Disability Insurance, often called DI or disability income insurance, is a form of insurance that insures the beneficiary's earned income against the risk that a disability will make working uncomfortable , painful , or impossible...
and Long term care insurance
Long term care insurance
Long-term care insurance , an insurance product sold in the United States, United Kingdom and Canada, helps provide for the cost of long-term care beyond a predetermined period...
.
Laws against discrimination
Those recommendations, and earlier ones issued by the ELSI Working Group and NAPBC led, in part, to new legislation and policies at both the federal and state levels. The Health Insurance Portability and Accountability ActHealth Insurance Portability and Accountability Act
The Health Insurance Portability and Accountability Act of 1996 was enacted by the U.S. Congress and signed by President Bill Clinton in 1996. It was originally sponsored by Sen. Edward Kennedy and Sen. Nancy Kassebaum . Title I of HIPAA protects health insurance coverage for workers and their...
(HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.
The next step in addressing the issue of genetic discrimination was taken by President Bill Clinton
Bill Clinton
William Jefferson "Bill" Clinton is an American politician who served as the 42nd President of the United States from 1993 to 2001. Inaugurated at age 46, he was the third-youngest president. He took office at the end of the Cold War, and was the first president of the baby boomer generation...
. The President had earlier supported proposed legislation that would have banned all health plans - group or individual - from denying coverage or raising premiums on the basis of genetic information. When the legislation failed to pass Congress, President Clinton issued an executive order ( Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information) in February 2000 prohibiting agencies of the federal government from obtaining genetic information about their employees or job applicants and from using genetic information in hiring and promotion decisions.
There continues to be a high degree of interest in these topics in state legislatures. More than one hundred bills were introduced in state legislatures in 2000 alone. Some would inaugurate protection from genetic discrimination while others would modify or clarify existing legislation.
Legislation in the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
called the Genetic Information Nondiscrimination Act
Genetic Information Nondiscrimination Act
The Genetic Information Nondiscrimination Act of 2008 , is an Act of Congress in the United States designed to prohibit the improper use of genetic information in health insurance and employment...
prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition
Genetic predisposition
A genetic predisposition is a genetic affectation which influences the phenotype of an individual organism within a species or population but by definition that phenotype can also be modified by the environmental conditions. In the rest of the population, conditions cannot have that effect...
to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring
Hiring
Hiring may refer to:* Recruitment of personnel * Renting of something...
, firing
Firing
Dismissal is the termination of employment by an employer against the will of the employee. Though such a decision can be made by an employer for a variety of reasons, ranging from an economic downturn to performance-related problems on the part of the employee, being fired has a strong stigma in...
, job placement, or promotion
Promotion (rank)
A promotion is the advancement of an employee's rank or position in an organizational hierarchy system. Promotion may be an employee's reward for good performance i.e. positive appraisal...
decisions. It was signed into law by the President on May 21, 2008.
See also
- DysgenicsDysgenicsDysgenics is the study of factors producing the accumulation and perpetuation of defective or disadvantageous genes and traits in offspring of a particular population or species. Dysgenic mutations have been studied in animals such as the mouse and the fruit fly...
- GattacaGattacaGattaca is a 1997 science fiction film written and directed by Andrew Niccol. It stars Ethan Hawke, Uma Thurman and Jude Law with supporting roles played by Loren Dean, Ernest Borgnine, Gore Vidal and Alan Arkin....
-- A film about Genetic discrimination - Genism
- Human Genome ProjectHuman Genome ProjectThe Human Genome Project is an international scientific research project with a primary goal of determining the sequence of chemical base pairs which make up DNA, and of identifying and mapping the approximately 20,000–25,000 genes of the human genome from both a physical and functional...
- Health Insurance Portability and Accountability ActHealth Insurance Portability and Accountability ActThe Health Insurance Portability and Accountability Act of 1996 was enacted by the U.S. Congress and signed by President Bill Clinton in 1996. It was originally sponsored by Sen. Edward Kennedy and Sen. Nancy Kassebaum . Title I of HIPAA protects health insurance coverage for workers and their...
- Genetic Information Nondiscrimination ActGenetic Information Nondiscrimination ActThe Genetic Information Nondiscrimination Act of 2008 , is an Act of Congress in the United States designed to prohibit the improper use of genetic information in health insurance and employment...
Links
- Genome.gov/10002328
- BBC NewsBBC NewsBBC News is the department of the British Broadcasting Corporation responsible for the gathering and broadcasting of news and current affairs. The department is the world's largest broadcast news organisation and generates about 120 hours of radio and television output each day, as well as online...
- Respond Genetic Discrimination url=http://www.respondgeneticdiscrimination.com/