What every patient should know before taking a consumer genetic test.
Today, there are hundreds of companies offering to analyze your DNA, or parts of it to let you know everything from your health risks and ancestry to very specific traits such as your favorite smells or athletic ability. Before you embark on this genetic journey of self- discovery, here is what you should know:
1. Consumer genetic testing may provide you with valuable information at the price of your privacy.
Companies such as 23andme make efforts to disclose their policies before you take their test. However, this does not apply to all companies. Many companies have very vague and lengthy privacy statements. An analysis of the privacy policies written by 30 consumer genetic testing companies found that most did not meet international transparency guidelines related to confidentiality, privacy, data use. This analysis was completed by public health researchers at the University of Wisconsin- Milwaukee reported in 2017 in Genetics in Medicine. Patients must also understand that once you click “agree.” You are consenting to the company’s terms even if the terms change down the line and they often do. Take time to read and understand consents.
2. Your genetic information may be online, and you may not even know it.
Websites such as GEDmatch allow users to upload their genetic codes to databases in hopes of discovering their relatives and ancestors. This database was recently used to identify the suspect in a murder case from 20 years ago after matching the genetic fingerprint with the genetic code of the suspect’s family member. The suspect, known as the “Golden State Killer” was a man who killed 12 people and raped 45 women across California between 1976 and 1986. Even though, the suspect was not in this database, a distant relative of his was. Using this genetic information with the fingerprint from the crime scene, investigators were able to narrow down the suspect to one family. Using traditional crime investigation, there were able to narrow down the suspect to James James DeAngelo, a retired police officer who lived very close to the crime scene. This technique has been used to crack other cold cases from around the world. It’s a triumph for the crime world but has invoked criticism from genetic experts.
3. Your health insurance or your employer can not use this information against you.
Several laws at the federal and state levels help protect you against genetic discrimination. A federal law called the Genetic Information Nondiscrimination Act (GINA) protects you from genetic discrimination. GINA has two parts: Title 1 makes it illegal for insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage. Title II makes it illegal for employers to use a person’s genetic information when making decisions about hiring, promotion and other terms of employment.
GINA and other laws do not apply when an employer has fewer than 15 employees. GINA does not protect against genetic discrimination in your disability, life or long-term care insurance.
Have no fear! Some states offer more protection! California and Alaska have the strongest consumer genetic privacy protections. California’s law called CalGINA has expanded its protections to include housing, mortgage lending, education, and public accommodations. The law allows victims of genetic discrimination to seek monetary damage. Other states have developed regulations concerning genetic non-discrimination and insurance, health insurance coverage, genetic privacy, and research.
4. If you are unsure about your results, consult your doctor.
Companies such as 23andme use saliva samples or inner cheek swabs sent in by customers to test for your ancestry and various factors related to your health. These tests can be estimates rather than definitive results. If you take the test and your ancestral data, is unlike anyone profile, the algorithms that assign ancestry usually make a “best guess” which is usually close but imperfect.
The accuracy of your test depends on how many people have taken that test with your similar background. A test for “Irish” versus “French” ancestry is very sensitive to the exact method and data used. However a test for “East Asian” may give the same results no matter the method or data used.
If you receive unexpected health information from a home genetic test, please consult your doctor and consider a genetic blood test to confirm the results.
Disclaimer: Opinions are my own and do not reflect that of my institutions. These are articles are not meant to provide medical advice only to educate.