The availability of genetic testing has boomed recently. Consumers can now order genetic tests via the Internet without a doctor's involvement. Although these tests are designed to help people by providing more information about their health risks, they come with certain downsides. Be aware of the potential dangers of genetic testing and how you can help avoid these dangers before embarking on testing.
Possible Discrimination
The development of so many new tests for different genetic diseases and susceptibilities in recent years has challenged ethicists and lawmakers to try to keep these tests from harming the people they are designed to help. Without guidelines as to who can access genetic information and what it can be used for, there's the real possibility of discrimination against a person based on his genetic makeup. In the U.S., federal and state laws have been enacted to protect people against discrimination in employment and health care based on genetic test results. Although these laws appear to provide extensive protections, it's possible they could have missed certain situations under which discrimination could occur. Also, these laws don't cover life insurance. Some consumers are hesitant to pursue genetic testing for fear of repercussions if they test positive for something.
Stigmatization
Some people who get a positive genetic test result report facing discrimination or stigmatization in social settings. People can feel stigmatized or a sense of a devalued social identity due to their family history of a condition or a positive genetic test result. A study published in the American Journal of Medical Genetics regarding people at risk of Huntington disease found that 32.9 percent of the respondents reported experiencing some type of discriminatory behavior in social relationships, and 24.4 percent said people changed the way they talked to them once learning about their genetic risk.
Anxiety
Finding out about a positive genetic test result and corresponding disease risk can cause anxiety levels to skyrocket. Even learning of a negative test result can lead to a type of anxiety called survivor guilt. A person who learns she has not inherited a disease mutation that has struck other family members can experience intense guilt and discomfort that she was spared while other loved ones were not. Unnecessary anxiety can also develop over misinterpretation of a test result. Some genetic tests are simply screening tests, which are designed to indicate the chance of a condition developing but not a certainty. Usually, additional tests are necessary after a positive screening test. Other tests detect genetic changes that are associated with a higher likelihood of disease but don't accurately predict disease occurrence. There can be dangerous misunderstandings unless you get sufficient counseling about the purpose and limitations of a genetic test.
False Reassurance
Consumers of genetic tests must understand the meaning of a negative result. Although some genetic tests are definitive, others, such as the screening tests mentioned above, only provide information on level of risk. A negative test result may merely indicate that the most common mutations were not detected; this doesn't mean there is no chance of disease. Without adequate pre- and post-test counseling, you may walk away with a negative test result falsely assuming that you'll remain disease-free.
References
- "Journal of Genetic Counseling"; Views of Discrimination among Individuals Confronting Genetic Disease; R. Klitzman; January 2010
- "American Journal of Medical Genetics"; Perception, Experience, and Response to Genetic Discrimination in Huntington Disease: The International RESPOND-HD Study; C. Erwin et al; July 2010
- Kids Health: Genetic Testing
