JUL 18, 2018 6:05 AM PDT

What Happens to Data From At-Home Ancestry DNA Kits?

Home DNA kits are extremely popular now. Bringing DNA and genetic testing to the home market is a huge advance in science and technology, but what are the risks?

Current testing methods allow a researcher with a DNA sample to find out information on ancestry, ethnic origin, medical history, diseases that could be inherited and even skincare and diet recommendations. The kits are a bit pricey but have come down significantly and during the 2017 holiday shopping season, they were a trendy gift for friends and family who were interested in genealogy research.

The companies that offer these tests are private companies, but once they have analyzed a DNA sample sent in by a customer, what happens to that data? That is the question many are asking since the kits became such a hot seller.

Think about the information that can be gleaned from a DNA sample. It's literally a person's entire health fingerprint, but unlike prints, it reveals much more. Companies who test the samples sent in are acquiring huge databases of information. While many Internet users never read the privacy policy on websites, it's a safe bet that people who purchase the at-home genetic testing kits also have not fully investigated the fine print in the agreements the companies post. There are laws that cover privacy for patients and healthcare providers, as well as laws that cover financial records, school records, and medical information. Companies like 23AndMe and Ancestry fall outside the purview of these laws.

Many might think that the information that is provided in these kits is harmless and of no use to hackers, but that isn't the case. Data on possible disease risks, past illnesses, and other medical conditions could do enormous damage in the wrong hands. Currently, the HIPAA statute only protects medical information that is used by doctors and health professionals who treat patients. The Genetic Information Nondiscrimination Act only protects genetic information from being used in a discriminatory way for employment purposes.

While data that's collected on shopping habits, web surfing, and other online activities can be anonymized easily, genetic data is unique to each individual, there is simply no way to mask personally identifiable information. The issue has complications for legal proceedings as well. Recently, a case that had gone cold for decades, that of the Golden State Killer, got hot again when investigators found a match to the suspect's DNA they had from one of the crime scenes on a public genetic data website called GEDMatch. Users of the site usually upload the DNA results they have from having used a home kit and the site is used to find people to whom a user might be related.

While it was never intended to be used for law enforcement, the detectives in the case had the suspects DNA via an authorized process, so they went for it. While they did not find Joseph James DeAngelo in the GEDMatch database, they did come across near matches, which indicated individuals related to him. DeAngelo was arrested in April 2018, largely as a result of the information found via the online DNA kits some of his relatives used.

Check out the video below for more information on how to keep your health information secure.

Sources: Newsday Pacific Standard Magazine The New York Times

About the Author
  • I'm a writer living in the Boston area. My interests include cancer research, cardiology and neuroscience. I want to be part of using the Internet and social media to educate professionals and patients in a collaborative environment.
You May Also Like
SEP 21, 2020
Clinical & Molecular DX
Smart Wearable Patch Signals Trouble Following Traumatic Injury
SEP 21, 2020
Smart Wearable Patch Signals Trouble Following Traumatic Injury
An ambulance pulls up to the site of a car accident, sirens blazing. Paramedics assess the crash victims, looking for si ...
SEP 28, 2020
Cancer
A New Transcriptomics Program in the Works Glioma Diagnosis
SEP 28, 2020
A New Transcriptomics Program in the Works Glioma Diagnosis
The future of medicine is “personalized healthcare.” However, testing remains a critical hurdle researcher&r ...
OCT 01, 2020
Cardiology
Investigating Inflammation in Coronary Artery Bypass Grafts
OCT 01, 2020
Investigating Inflammation in Coronary Artery Bypass Grafts
The heart is a vital part of the body that can last one hundred years, yet even a small change can cause massive consequ ...
OCT 03, 2020
Clinical & Molecular DX
Test Diagnoses Dementia While You Sleep by Estimating Your Brain Age
OCT 03, 2020
Test Diagnoses Dementia While You Sleep by Estimating Your Brain Age
Researchers at Harvard have discovered a novel diagnostic marker of dementia for identifying undiagnosed patients or tho ...
OCT 13, 2020
Cardiology
A Kidney Toxin Could Act as a Biomarker for Cardiovascular Risk
OCT 13, 2020
A Kidney Toxin Could Act as a Biomarker for Cardiovascular Risk
Biomarkers have taken the diagnostic field by storm over the past decade. The search for stable, easy to access indicato ...
OCT 13, 2020
Immunology
Why Halloween Is Extra Scary for Kids With Peanut Allergies
OCT 13, 2020
Why Halloween Is Extra Scary for Kids With Peanut Allergies
A recent study showed that there is an 85 percent spike in peanut allergy anaphylaxis cases on Halloween. The study, per ...
Loading Comments...