How can I get tested to find out if I have Factor V Leiden?
There are a number of ways you can get tested:
- visiting your doctor
- going to a hospital or clinical laboratory that tests blood
- getting a “direct-to-consumer” genetic testing kit
DTC (Direct-To-Consumer) Genetic Testing for Factor V Leiden
Companies like 23andMe now offer “direct-to-consumer” DNA genetic testing kits that include testing for Factor V Leiden.
There has been some controversy and debate around these DTC genetic tests with fair arguments being given by both sides.
Pros for having a DTC genetic test performed:
- The test results typically provide a wealth of information by offering a simple overview report showing the increased or decreased probability of different diseases or traits and then also provides a great deal of detail for each disease or trait.
- Individuals can access their genetic information confidentially. This is important especially if the person is concerned about risks of insurance discrimination.
- The test reports often give practical tips on things that one can do to lower disease risk.
- The tests promote interest in and awareness of genetics, and improve familiarity with genetic concepts and terminology among the public.
- The information can be entertaining as it does not only include information about diseases and disorders but includes fun and interesting characteristics about the individual as well.
- The large volume of genetic and self‐reported phenotypic information being gathered from the participants will enhance scientific discovery, and improve our individual and societal knowledge about the relationships between genetics and disease.
Cons for having a DTC genetic test performed:
- The value of the data is limited given that environmental factors, lifestyle and habits are not incorporated into the results.
- Some feel that unexpected results about an unknown condition or a misinterpretation of the results can lead to people experiencing undue or unnecessary stress and anxiety.
- Genetic science is expanding rapidly and not all possible genetic factors are tested for, usually just the more common conditions.
- Some of the tests could reveal genetic information for increased risks for certain diseases and disorders that are not preventable. Some people do not react well to such negative news.
- The ancestry data used to match you against others is limited to that particular testing company’s database.
- Sometimes unintended information is revealed and can cause major conflict within families such as paternity issues.
- There is also the danger of these tests results giving a sense of false reassurance if misinterpreted.
- Some say that the information presented can be complex and require a high health literacy to interpret.
- Some groups have also expressed concerns about how the information might be used since there are no uniform standards regarding the use of samples or information by private companies.
- Some testing companies offer personalized advice on dietary supplements based on your test results. Some even try to sell them to you. But no studies show that genetic tests can give you useful information about those or dietary choices.
- Laws are in place to protect you from being denied health insurance or charged more for it. But those laws don’t apply to life insurance, disability insurance, or long-term care insurance. That means it’s possible your genetic test results could be used by the companies that sell these types of insurance.
- Most of these tests are made privately and can be sold to you without any proof that they work as advertised. That may soon change, though. The FDA is coming up with guidelines for genetic tests.
- While no testing company can guarantee that the information it gives you is 100% accurate, some are better than others. If you decide to try at-home DNA testing, look for one that meets the U.S. standards called Clinical Laboratory Improvement Amendments (CLIA), and check to see if the tests have been approved by the FDA.
- Read the fine print. Most companies make an effort to keep personal data “private,” but that can mean different things. Make sure you understand what data they’re collecting and who will see it.
- The American Academy of Pediatrics (AAP) and the American College of Medical Genetics and Genomics (ACMG) strongly discourage the use of direct-to-consumer and home kit genetic testing of children because of the lack of oversight on test content, accuracy, and interpretation.
If you are unsure, talk with a genetic counselor before deciding whether to get tested. If you do, the counselor can help you understand the results.
Whatever your views are concerning the DTC genetic testing kits, they have definitely stimulated the need for the medical community to become more educated in the area of genetics as they are asked to explain the results from these “test at home kits” to their patients.
One of the many objectives of the American Factor V Leiden Association is to serve as a resource to you and the medical community should you have questions concerning Factor V Leiden.