Are DNA Testing Companies Trustworthy?

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Are DNA Testing Companies Trustworthy?

DNA kits have become a commercialised but entertaining way to find out about one’s culture, background and genetic makeup.

Yet there is a dark underside to DNA kits. Possibly opening the door for third party interference, health scares and even possible government profiling.

What Are DNA Kits?

Though DNA Kits have been circulating in the news recently, they are nothing new. 23andMe was founded in 2006 and began offering direct-to-consumer testing in 2007. Since then, they have accumulated over 10 million customers. According to the National Human Genome Research Institute this is due in part to the dramatic drop in the cost of DNA sequencing by 90% between 2011 and 2017.

The idea is to use DNA to connect people with their biological relatives, ethnic background, and health information. According to an estimate by the MIT Technology Review, over 26 million people have used an at-home DNA kit since February. 

Outside of finding one’s ancestors, another crucial point of interest is the health data that one’s DNA can reveal. The Food and Drug Administration has allowed 23andMe to provide reports on genetic predisposition to certain diseases. This can range anywhere from Alzheimer’s to celiac disease, and new reports are being added frequently.

Unexpected Reveals and the Importance of Data Sets

However, the information found by these kits sometimes results in the opposite of the intended purpose. Discoveries of unexpected half-siblings, unrelated parents and unpleasant familial history are increasingly common. This results in people reaching out in search of others who experienced similar discoveries.

Support groups have been appearing online in response to this. With nearly 5000 members, NPE Friends Fellowship is a successful example. It is run by a woman who discovered her deceased father was not her biological father and follows her process of grief. DNA kits have branched out from family trees to health and as a result a whole slew of awkward family-dinner topics have become common.

There are also fears that information can be misinterpreted. The possibility of receiving a “negative” on a test for breast cancer markers such as certain genetic mutations could lead people to think that there is no chance that they will contract it. As the tests are direct-to-consumer, there is no doctor to prevent misinterpretation of the information.

Questionable Precision 

Additionally, the accuracy of these tests must also be considered. DNA tests rely heavily on the data available to the company. CNET reports that AncestryDNA’s data was skewed heavily toward European regions, making estimates of other areas more difficult. Comparatively, 23andMe has more data for East Asian regions. A fact that could lead the same individual to receive very different estimates from each company.

Genome wide association studies (GWAS) faced criticism when a 2009 analysis showed that 96% of participants were of European descent. In 2016 it was found that the percentage of non-Europeans had increased to 20%. Still there was little change in regards to those of African or Latin American ancestry.

An analysis by Alice B. Popejoy and Stephanie M. Fullerton states that this can lead to numerous issues. They said: “Geneticists will continue to miss important information about disease biology. They won’t know how many of the thousands of associations between variants and diseases, and between variants and responses to drugs, observed in populations of European ancestry replicate in other groups”.

Therefore, it is no surprise how wildly the DNA kits can vary in their returns. Especially for those not of European descent, who are likely to be under-represented in the data sets, which results are based on.

Privacy Concerns and Data Sharing

In January, Buzzfeed News reported that Family Tree DNA is working with the FBI and sharing DNA data with the institution. The FBI have used public genealogy databases before. Yet this stands as the first time a private firm voluntarily gave access to its data. The firm has not disclosed third party involvement and users felt that their trust had been violated. However, the firm has stated that agents will not have access to more information. Only to that which is freely available to other users without a court order.

In a survey conducted by the genealogist Maurice Gleeson, “of people involved in genealogy in the US and Europe, 85 percent of respondents said they were comfortable with law enforcement using their DNA profiles to catch a serial killer or rapist”. In 2018, detective’s use of a public database led to the arrest of the suspected Golden State Killer who matched through the DNA of a relative. Buzzfeed News further reports that people are generally in favour of their data being shared to aid in solving violent crime. Yet a large portion of dissatisfaction is likely because they were not informed that the data would be used in such a way.

Side Effects of Data Sharing

The US Government passed The Genetic Information Non-discrimination Act in 2008 which protects against discrimination by health insurers and employers. Yet it fails to prevent discrimination based on ones need of life, disability, or long-term care insurance. Therefore, information found using these tests can be used discriminatorily.

Reporter K. Oanh Ha stated her concern after taking a test with 23Mofang, a Chinese company. She believes that such tests could potentially put individuals at higher risk of discrimination or surveillance based on ethnicity. This follows on the heels of the Human Rights Watch stating that Chinese authorities collected DNA samples from millions. Most notably in the region that’s home to the Uighur ethnic group, an ethnicity facing intense discrimination in China.

Another crucial concern is that of data breaches. When information is shared online, that information is no longer protected by a privacy policy. Veritas Genetics had a data breach in November this year, and the company declined to state what information had been stolen. Only a small number of customers were affected, and the breached data did not contain test results or medical information. However, the company did not issue a public statement or update their website to reflect this event. Spokesperson Rodrigo Martinez “denied there was a data “theft” but provided no evidence for the claim”.

Looking Forward

A new plan AncestryHealth Plus is due to be released in 2020 and provide a plethora of new reports. It is due to update as new technology reveals more information. This stands against the expectation that the industry will decline, with AncestryDNA seeing a growth decline by 51 percent from April 2018 to May 2019. 23andMe is in a similar position with a decline in growth of 43 percent.

Dr Leah Larkin, writer of the blog The DNA Geekcites a few possible reasons for the decline. “One possibility is market saturation. Perhaps genetic genealogy is approaching its natural consumption level. Where those who are inclined to purchase a test already have.”

However, she notes that the decline became evident in April of last year. This was when it became public knowledge that law enforcement began to use some genealogy databases. Whether the decline is a reflection of privacy concerns or a reflection of the market remains to be seen. 

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