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Genetic discrimination

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Also listed as: Ethical issues in genetic research, Genetic Nondiscrimination Act
Related terms
Background
Methods
Research
Implications
Future research
Author information
Bibliography

Related Terms
  • Ethics, ethical issues in genetic research, Genetic Nondiscrimination Act, genetic testing, GINA, Health Insurance Portability and Accountability Act, HIPPA, nondiscrimination laws.

Background
  • Genetic discrimination occurs when someone is treated unfairly based on his/her biological makeup. As researchers continue to learn more about genetic disorders, some experts are concerned that genetic discrimination may happen.
  • In April 2008, the U.S. Senate passed the Genetic Information Nondiscrimination Act (GINA), an amended version of H.R. 493, which passed the House April 25, 2007. According to the Genetic Alliance, "the Genetic Information Nondiscrimination Act [H.R. 493, S. 358] is a bill that will prohibit discrimination on the basis of genetic information with respect to health insurance and employment."
  • The bill provides basic legal protections that will enable and encourage people to take advantage of genetic screening, counseling, testing, and new therapies. It prevents health insurance companies from denying coverage or adjusting premiums based on a person's predisposition to a genetic condition. It will also prohibit employers from discriminating on the basis of predictive genetic information.
  • However, laws are not in place to protect against all possible types of genetic discrimination. For instance, prenatal genetic testing also brings up ethical and moral issues concerning fetuses. For many genetic disorders, parents have the option of performing prenatal testing in order to determine if a child may be born with a specific disorder. Some patients use prenatal testing as a tool to decide whether or not to end the lives of their unborn children. This practice is highly debated and remains controversial. There are also serious health risks associated with prenatal genetic testing, including miscarriage.
  • It is important to note that genetic tests only provide a probability for developing a particular disorder. This is because genetic disorders appear to be caused by a combination of genetic and environmental factors. Some people who carry a disease-associated mutation may never develop the disease. Therefore, someone could potentially be discriminated against and then never develop the disease. In other cases, a healthy fetus could be aborted.
  • During in vitro fertilization, some parents may want to screen embryos based on gender or the potential risk for genetic disorders or defects. Choosing which embryos to implant in a woman may be considered discriminatory towards other embryos that could have been used. However, this topic is hotly debated, as people have different definitions of when life begins and whether or not an embryo has the same rights as a human.
  • In the future, it may be possible to alter the genes of an embryo for medical or non-medical reasons. For instance, individuals may ask scientists to manipulate the genes of an embryo to ensure that their child is a boy with blond hair and blue eyes. Scientists sometimes call "genetically engineered" embryos "designer babies." This type of genetic manipulation would raise many ethical, religious, and social concerns. Some people do not believe an embryo should be changed at all before conception, even for medical reasons. Others might support altering an embryos genetic makeup for medical reasons, but argue against non-medical reasons. Such people may view non-medical genetic manipulation as unnecessary and as a threat to social diversity.
  • Although some states have genetic-information nondiscrimination laws, they are not comprehensive. In other words, these laws are not complete, and they do not fully protect individuals from all types of genetic discrimination. Therefore, the U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have set aside some of their budget to investigate the ethical, legal, and social issues (ELSI) regarding genetic research and its implications. The findings of these organizations will help lawmakers develop new laws and gain a better understanding of the implications of genetic discrimination.

Methods
  • General: Researchers, lawmakers, and healthcare professionals are working together to develop federal laws regarding genetic discrimination in individual health insurance coverage and the workplace. They are also developing laws to guarentee that courts, schools, adoption agencies, the military, and other industries use genetic information non-discriminately.
  • Some states have their own genetic nondiscrimination laws, but they are not comprehensive; these laws are not complete, and they do not fully protect individuals from all types of genetic discrimination. Forty-one states have laws that prohibit insurance companies from discriminating against people based on a person's genetic test results. Thirty-two states have passed their own laws that prohibit genetic discrimination in the workplace.
  • The main goals of nondiscrimination laws are to prevent insurance companies from denying, limiting, or cancelling insurance policies on the basis of a person's genetic makeup and to prevent employers from using genetic information to screen potential employees or fire existing employees. Many insurance companies will not cover the cost of genetic testing unless they have access to the patient's results.
  • Genetic Information Nondiscrimination Act of 2008 (GINA): In April 2008, the U.S. Senate passed the Genetic Information Nondiscrimination Act (GINA), an amended version of H.R. 493, which passed the House April 25, 2007. According to the Genetic Alliance, "the Genetic Information Nondiscrimination Act [H.R. 493, S. 358] is a bill that will prohibit discrimination on the basis of genetic information with respect to health insurance and employment."
  • The bill provides basic legal protections that will enable and encourage people to take advantage of genetic screening, counseling, testing, and new therapies. It prevents health insurance companies from denying coverage or adjusting premiums based on a person's predisposition to a genetic condition. It will also prohibit employers from discriminating on the basis of predictive genetic information.
  • The legislation would stop both employers and insurers from requiring applicants to submit to genetic tests by maintaining strict use and disclosure requirements of genetic test information and imposing penalties against employers and insurers who violate these provisions
  • This bill has been debated in Congress for 13 years. In 2003 and 2005, the Senate unanimously passed versions of GINA, but in both instances the bill stalled in committee in the House. Last year, however, the House passed the measure quickly, and the most recent Senate vote marks the third time the Senate has expressed its commitment to nondiscrimination.
  • Genetic Information Nondiscrimination Act of 2007 (GINA): The U.S. House of Representatives passed the Genetic Information Nondiscrimination Act of 2007 (GINA). The act protects people from being discriminated against by heath insurance companies and employers based on their genetic information. By helping Americans feel protected from discrimination, more people may take advantage of genetic testing as part of their medical care.
  • Executive Order 13145: In 2000, Executive Order 13145 was issued. This order prohibits genetic discrimination in the workplace for federal employees (people who work for the U.S. government).
  • Health Insurance Portability and Accountability Act (HIPPA): The Health Insurance Portability and Accountability Act of 1996 (HIPAA) also provides some protection from discrimination. However, it does not address many important issues related to genetic technologies.
  • HIPPA only applies to employer-based and commercially issued group health insurance. This law prohibits group health plans from using any health status-related factor, including genetic information, as a basis for denying or limiting eligibility for coverage or for increasing premiums. It also states that if a person tests positive for a disease-associated genetic mutation, but he/she has not been diagnosed with the illness, it is not considered a pre-existing medical condition. This is because genetic disorders are believed to be caused by a combination of genetic and environmental factors. Some people who carry a disease-associated mutation may never develop the disease.
  • However, this law does not offer sufficient protection against discrimination. For instance, HIPPA does not prohibit employers from refusing to offer health coverage. It also does not prohibit the use of genetic information as a basis for charging a group more money for health insurance. The law does not prohibit health insurance companies from requiring a person to take a genetic test. In addition, the law does not apply to individual health insurers, nor does it limit the disclosure of genetic information.
  • HIPAA National Standards to Protect Patients' Personal Medical Records Act of 2002: This law protects medical records and personal information maintained by doctors, hospitals, health plans, health insurance companies, and healthcare clearinghouses. The law does not address genetics specifically. Instead, it regulates personal health information in general, which may include genetic information.
  • Although this law limits the use and release of private health information without the explicit consent of the patient, it is unclear if it includes genetic information. Most disclosure of health information is restricted to the minimum needed for the intended purpose. The law also establishes new criminal laws for those who improperly disclose private health information. It also gives patients the right to access their medical records and to know who else has excess to the information.

Research
  • General: The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have set aside some of their budget to investigate and define the ethical, legal, and social issues (ELSI) regarding genetic research and its implications.
  • Clinical issues: Clinical issues are one major concern in light of new genetic technologies. For example, researchers are studying ways to evaluate and regulate genetic tests for accuracy and usability. Currently, there is little to no federal regulation of genetic testing. It is important to find ways to balance the scientific limitations and social risks of new genetic technologies with long-term benefits. For instance, some people who carry a disease-associated mutation may never develop the disease. This is because genetic disorders are believed to be caused by a combination of genetic and environmental factors. As a result, patients who test positive for a specific gene may become excessively worried about developing the disorder and experience a decreased quality of life. Therefore, patients should receive genetic counseling before and after genetic testing is performed. This helps ensure that patients understand the risks and limits of genetic testing.
  • Researchers are also investigating ways to prepare healthcare providers and the general public for new developments in genetics.
  • Commercialization of products: New technologies in genetics have led to questions about property rights (including patents, copyrights, and trade secrets) and accessibility of data and materials. There are arguments both for and against gene patenting.
  • Advocates often argue that gene patenting rewards researchers for their discoveries and helps fund further research. It may also help prevent researchers from duplicating work, and it may help researchers investigate new, unexplored areas of genetics. Researchers have access to new discoveries and inventions.
  • Opponents of genetic patenting argue that patents could prevent or slow the development of new diagnostic tools or therapies by third parties because it is expensive to use patented data. Patenting stacking, or patenting a single genomic sequence in several different ways, may discourage the development of new products because of high royalty costs. In addition, some believe that people should not be able to patent a gene because it is part of nature. Others argue that private companies who own certain patents may monopolize certain gene test markets.
  • Philosophical implications: A person's genetic makeup is not the only factor that influences his/her behavior, personality, or predisposition to diseases. A person's environment and lifestyle choices also play a role. Most researchers believe that a combination of these two elements leads to the development of specific behaviors, personality traits, and diseases. However, experts disagree over which has a greater impact on an individual. This calls into question the validity of genetic testing. Research in this field is ongoing.
  • Using genetic information fairly: Researchers are trying to establish guidelines to ensure that genetic information is used fairly. It is important that insurers, employers, courts, schools, adoption agencies, the military, and other industries use genetic information non-discriminately. For instance, unless non-discriminatory laws are put in place, a person might require a child to undergo genetic testing before choosing to adopt him/her. If a person has genes that are associated with aggressive or violent behavior, a lawyer might use this information as a means to prosecute a person for a crime. Laws have not yet been passed to determine who has access to personal genetic information and how it will be used.
  • Health and environmental issues: There are also many ethical questions associated with genetically modified foods (GMFs). GMFs are plants and animals that have been genetically changed for human consumption. GMFs are produced to enhance or improve the organism's natural traits.
  • Although these products have been available since the 1990s, it remains unknown if GMFs are safe for humans or the environment.
  • Another growing concern is the impact on developing countries. In recent years, GMFs have become increasingly available in developing countries. This is because it has been suggested that these foods may improve nutrition in poor countries with food shortages and help generate revenue. However, opponents of GMFs argue that the industry will increase developing nations' dependence on industrialized nations because these poor nations rely on the financial benefits of exporting their crops to wealthier nations. Opponents also suggest that industrialized nations, including the United States and many European countries, may exploit the natural resources of poorer, less-developed countries.
  • Privacy and confidentiality: Privacy and confidentiality is another major concern related to genetic technologies. Researchers are trying to establish laws that describe who owns and controls genetic information.
  • Psychological impact and stigmatization: Genetic tests only provide a probability for developing a particular disorder. This is especially true for health conditions, such as heart disease, obesity, and cancer, which have been linked to several different genetic mutations. Some people who carry a disease-associated mutation may never develop the disease. As a result, patients who test positive for a specific gene may become excessively worried about developing the disorder and experience a decreased quality of life.
  • Reproductive issues: There are many controversial issues surrounding genetic procedures that involve reproduction, such as embryonic stem cell research and prenatal genetic testing. Researchers and lawmakers aim to ensure that healthcare providers and genetic counselors properly explain the potential risks, limitations, and benefits of genetic technology to patients. It is also important to make sure that patients fully understand the genetic test results, including the risk of passing a disorder onto a child. Scientists are also evaluating the reliability of fetal genetic testing.
  • Embryonic stem cell research is controversial. Embryonic stem cells are present in organisms during the very early stages of development. In an embryo that is 3-5 days old, these stem cells produce specialized cells that make up the heart, liver, lungs, and other tissues.
  • Scientists are capable of removing stem cells from a human embryo for research. They are removed from eggs that have been fertilized in a laboratory and then donated for research purposes. Scientists want to learn more about the functions of these cells and how they are different from specialized cells. Researchers have suggested that these cells may be an effective cure for diseases, such as multiple sclerosis (MS). These cells may be able to replace the dead or defective cells that cause such diseases. However, embryonic stem cell research has yet to be effective in the treatment of any diseases. Adult stem cell research is currently much more promising as adult stem cells have been used to treat over 70 conditions.
  • Some individuals believe it is unethical to isolate stem cells from an embryo because embryos have the potential to develop into human beings
  • Uncertainties: Researchers are trying to determine if genetic testing should be available for untreatable diseases. Another concern is if parents should have the right to have their children tested for adult-onset diseases. This is because some people who carry a disease-associated mutation may never develop the disease. A child may not want to know if he/she is predisposed to a certain condition because it may cause him/her to become excessively worried about developing the disorder, and as a result, he/she may experience a decreased quality of life. If children are allowed to be tested for adult-onset diseases, it is unclear when the child should have access to this information. Scientists are also evaluating the reliability and interpretability of genetic tests.

Implications
  • Over the years, there have been significant advances in genetic technology. These new discoveries and inventions have also given rise to many new ethical issues.
  • In April 2008, the U.S. Senate passed the Genetic Information Nondiscrimination Act (GINA), an amended version of H.R. 493, which passed the House April 25, 2007. The bill prohibits employers and health insurance companies from using the results of predictive genetic tests to discriminate against their workers or members.
  • However, laws are not in place to protect against all possible types of genetic discrimination. Researchers, lawmakers, and healthcare organizations are working together to develop new laws to prevent discrimination and to ensure that all individuals are treated fairly, regardless of their biological makeup.

Future research
  • In the future, it may be possible to alter the genes of an embryo for medical or non-medical reasons. For instance, individuals may ask scientists to manipulate the genes of an embryo to ensure that their child is a boy with blond hair and blue eyes. The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have set aside some of their budget to investigate the ethical, legal, and social issues (ELSI) regarding genetic research and its implications. These organizations have a unique understanding of the ethical, legal, and social issues of genetic technologies because they helped complete the Human Genome Project. The findings of these organizations will help lawmakers develop new laws and gain a better understanding of the implications of genetic discrimination.
  • The DOE and NIH are currently studying areas, such as clinical issues, genetic patenting, philosophical issues, fair use of genetic information, health and environmental issues, confidentiality, psychological impact, and reproductive issues. Researchers hope that the results of these studies will lead to the development of comprehensive non-discrimination laws on a federal level.

Author information
  • This information has been edited and peer-reviewed by contributors to the Natural Standard Research Collaboration (www.naturalstandard.com).

Bibliography
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Copyright © 2011 Natural Standard (www.naturalstandard.com)


The information in this monograph is intended for informational purposes only, and is meant to help users better understand health concerns. Information is based on review of scientific research data, historical practice patterns, and clinical experience. This information should not be interpreted as specific medical advice. Users should consult with a qualified healthcare provider for specific questions regarding therapies, diagnosis and/or health conditions, prior to making therapeutic decisions.

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