Here's what you need to know about privacy when you take a DNA test

What should you know about DNA testing and privacy before you embark upon a DNA test? Mae Richards of Honest Product Reviews share her top tips in this guest blog.

1. Some Information about paternity DNA testing and privacy involved

The unlocking of Deoxyribonucleic acid or DNA information has really helped us to understand heredity and parentage influence. According to BabyMed, DNA samples are usually obtained from semen, hair, cheeks, saliva, blood, body tissue and newborn baby’s umbilical cord. The DNA from the father and mother are divided in 50:50 ratio.

We also know that a DNA paternity test is close to 100% accurate and can be done during pregnancy. The accuracy is largely determined by the number of loci or DNA match points obtained from the donor. The three types of tests that can be done to determine parentage are:

• Invasive Testing
• Amniocentesis
• Chronic Villi Sampling (CVS)

Invasive testing is usually undertaken to determine the paternity of an unborn child. Amniocentesis testing on its part, involves the use of a needle and ultrasound.

The doctor uses ultrasound to direct the needle into the amniotic fluid to obtain samples of DNA material from the baby. This invasive procedure can be conducted during pregnancy, after 14 weeks of gestation. When you decide to take a paternity test, you will be requested to book an appointment and sign all the necessary forms consenting to the procedure. A lot of the time, you will be able to sign a privacy agreement when going through these tests. However, the privacy agreement sometimes differs across different clinics, so make sure that you read the fine print carefully to ensure your privacy.

2. Some information about consumer DNA testing and privacy involved

Consumer DNA testing is ideal for many different types of people, including parents, family researchers, adopted kids and people who want to find out more about their family secrets. Parents planning to have kids can use the test to know the type of genes they will be passing down to their children. Parents with adopted kids can have DNA tests done to establish if their adopted children have living relatives. With the advances in technology, you can easily order a DNA testing kit online and have it sent to you within days.

What will your DNA information reveal?

The information received will your reveal ethnicity and raw genealogical data. However, there are now also health and wellness DNA tests can help you know if are a carrier of certain diseases and genetic risks or simply get insights into your overall wellness and traits. The trait report may show your predisposition to various characteristics such as baldness and behaviours.

The wellness report offers critical information regarding the effects of genetic predisposition such as weight gain and vulnerability to alcohol flush condition. In regard to the carrier effect, health and wellness screening will real your family’s history and risk of developing diseases like dementia and heart disease.

What will the DNA test involve?

When you order a DNA kit, you typically get a sample container and in some cases a pre-stamped DNA testing kit. The entire package must be sent back to the testing facility for analysis. The sample should be secured and labelled appropriately before submission.

Depending on the testing procedure, you will most likely be asked to provide a saliva sample after performing a cheek swab. For your convenience, the testing facility will request that you create an account online, complete with name and password.

Once the results are in, the results will be sent via registered address or email. Results can also be viewed by logging into the DNA company website. It typically takes 4 to 14 weeks to obtain DNA results. For adults, the following 3 key tests are often requested; the Autosomal DNA test, Mitochondrial DNA (mtDNA) test and Y-DNA test.

     QUICK LINK: Five best DNA testing kits for ancestry

Autosomal DNA is far more popular because it can help you establish living members of your family and ancestries that may be spread elsewhere around the world. The mtDNA testing comes specifically from females and past generations of people of the same gender. The Y-DNA closely resembles the mtDNA testing, but the genetic materials are sought from the male members of your family.

3. Details of DNA testing and privacy

DNA testing, protections and information sharing are very important issues in the DNA testing industry. According to NextAdvisor, US privacy laws governing DNA testing are framed in the 2008 Genetic Information Nondiscrimination Act.

The federal laws were expressly enacted to protect individuals from genetic information based discrimination emanating from various quarters, including health insurance and employment. The laws and statutes cover a broad spectrum of issues, key among them; family health history, genetic services, genetic tests and individual participation in genetic studies. In spite of the comprehensive laws, there are loopholes that allow certain industries such those in the long term care and military to use genetic information discriminately.

You can begin your search for the best product by checking online reviews on the best dna test for ancestry. The information will help you learn about the different services, tests and privacy safeguards available. Data breaches arising from privacy protection usually occur when DNA companies anonymize the personal identifiers.

Potential problems

Problems may also occur as a result of loss, misuse and sharing of DNA information with third-party testing services. Third-party sharing relationships usually involve DNA service providers, affiliate companies, advertising entities and law enforcement bodies. When you use a DNA testing kit, it is important to read the privacy statement carefully and ensure you full understand your obligations and those of the service provider. Some genealogy service providers have a privacy policy indicating that personal information can be shared on very limited occasions.

For example, the genealogy service provider may transfer your information as part of its assets when the company is acquired by a different entity. It is important to know that services providers may also bring in third-party entities on their own volition when undertaking DNA extraction, processing and storage.

The process of deleting DNA information is usually not as clear as many people think. In some genealogical services, the only genetic information that can be removed are those in the production and research systems. Entities like Ancestry DNA often retain certain information for internal business purposes and also to help prevent identity theft. Due to the inconclusive nature of the privacy laws and policies, most companies maintain the right to process changes designed to enhance service delivery and safeguard information.

As part of the best industry practice, the DNA service companies should be able to inform you about any changes to their privacy policy. You can always call the office to discuss these changes and even cancel an existing account.

According to Popular Science, the three leading DNA testing companies in the US are AncestryDNA, Living DNA and 23andMe. The AncestryDNA privacy policy is ground on a strong foundation of simplicity, transparency and control. Customers are free to opt out of the firm’s research activities or have their data deleted in line with the rules. However, the information that has already been shared by partnering firms cannot be unshared. With respect to 23andMe, the company usually makes the decision on whether to hold samples for future reference. Individuals who have their data stored by the firm are free to request that the same be discarded.

  QUICK LINK: Ultimate beginner's guide to genealogy

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