Many consumers have been trying out DNA tests currently available on the market. Some are simply curious about what their DNA shows them. Others are looking for possible answers to a range of illnesses and conditions. But using direct-to-consumer DNA testing may also make consumers more vulnerable to having their data shared where they might not want it shared.
Earlier this year, DNA testing giant 23andMe revealed that they sold the rights to develop a drug based on its consumers’ data. This drug is currently under consideration as a potential treatment for inflammatory diseases. This, in turn, could help consumers with pain. On the other hand, these drugs are also increasing in cost as big pharma rakes in the profits. This contributes to the lack of privacy that consumers face.
Science Alert has suggested that patients find the DNA contracts deceiving because many aren’t aware of how profitable their DNA is. The deception stems further into 23andMe privacy (or lack thereof), as around 10 million people worldwide have paid 23andMe to get their genetic data sequenced.
Lack Of DNA Privacy
Some individuals worry about what they will find amid their 23andMe results. Others are skeptical about the accuracy. However, many consumers tend to forget the issue of privacy — which is the biggest risk of them all. Testing companies like 23andMe value their consumers because their business solely depends on maintaining your trust.
In a 2018 Impact report, chief privacy officer at Ancestry, Eric Heath, explains that “in terms of security, we are very cognizant that without our customers’ trust, we do not have a business.” This is because DNA privacy is vital to the consumer. Once there’s a break in trust, it’s highly unlikely consumers will want to work with a DNA testing company again.
Despite this, experts and consumers are finding that, when it comes to genetic testing, they are vulnerable to invasions of privacy. And because this is such a new industry, there are no legislative protections in place. In 2018, Fast Company reported that 23andMe and Ancestry faced investigations by the Federal Trade Commission (FTC). The investigation was opened over their policies for handling personal information and how they shared information with third parties. This included the selling of data to third parties without their customers’ knowledge.
Who Is Using Your Data?
This makes consumers concerned because they don’t know who has access to their data and for what purposes. Besides pharmaceutical companies, others who may want your data include insurance companies and law enforcement agencies. The most distressing aspect of this process is that these DNA testing companies don’t have to tell you that your data is being sold. Companies like 23andMe are trying to respond to these concerns by giving consumers the choice to opt into research-related tests. Though, this doesn’t make it any less worrisome, as consumers still aren’t fully aware of what the pharmaceutical company might do with their data.
The Genetic Information Non-discrimination Act (GINA) was introduced in 2008 to address concerns of discrimination by DNA testing companies. However, experts believe that this law is too narrow. Currently, nothing prohibits these companies from accessing vital consumer information to sell to third parties. This concern is growing as 23andMe has started selling DNA data to big pharmaceutical companies.
23andMe Selling Data To Big Pharma
In 2018, Internet Health Report revealed that despite concerns raised earlier, thousands of consumers’ 23andMe results were sold over to the pharmaceutical giant, GlaxoSmithKline for $300 million. As a result, many consumers are starting to mistrust DNA testing companies like 23andMe. Because of this mistrust, The Future of Privacy Forum came up with a set of recommendations for best practices for DNA testing companies.
One of the more outstanding practices includes the “ban on sharing genetic data with third parties (such as employers, insurance companies, educational institutions, and government agencies) without consent or as required by law.” Even though consumers’ 23andMe results and data were sold to big pharmaceutical companies, there are actual benefits to this practice.
How Our DNA Can Be Used For The Greater Good
23andMe sold the rights to a pharmaceutical company in order to help develop a drug that will help consumers deal with inflammatory diseases. This is one of the major benefits of DNA testing. Scientists use this data to help them understand how genes may play a role in the emergence of certain diseases. This enables them to identify rare or new diseases.
An article at YourGenome, a site devoted to educating consumers about DNA and genomes, explains that “direct-to-consumer genetic testing promotes an interest in genetics and an awareness of genetic conditions and diseases.” This allows consumers to take a more active role in their health care. For example, if consumers’ 23andMe results test positive for diabetes, the consumer can take control of their health by treating it appropriately.
According to Dr. Talya Miron-Shatz, Ph.D., a certified medical decision-making expert from Buddy&Soul, “DNA can point to the presence of genes that are associated with diseases. In a few cases, there is a high likelihood that the person will become ill if the gene is there.”
Genetic testing can help identify gene mutations associated with the disease. This will enable consumers to better act to prevent or diagnose a condition earlier. This, in turn, will increase their chances of being able to better treat it. 23andMe results also give the consumer resources to monitor and find the proper treatment options.
Dr. Miron-Shatz adds, “Major breakthroughs in medicine can be accomplished by pairing genetic information with data on illness and mortality. This way you can, for example, find genes that are associated with illness later in life.”
There are benefits to making gene data available to law enforcement, too. In a recent study, a high-profile criminal case was solved when authorities tracked down the so-called Golden State serial killer after four decades. This came to be just by using DNA taken from the perpetrator’s cousins. DNA that is logged into GEDMatch, a DNA database.
Is It Worth Testing With Companies Like 23andMe?
DNA testing can be very beneficial for researchers and consumers looking to better understand the role of genes in health. However, if data violation worries you, it may be best to stick with genetic testing in the safety of a doctor’s office. Generally, a doctor or medical geneticist will only perform a genetic test as part of a genetic consultation. For many cases in the U.S., health insurance covers this test by doctor recommendation. However, according to Michelle Andrews from NPR, some results can affect the person’s life insurance. This is because long-term-care insurers have every right to check your genetic test results. And from there they can decide whether or not to cover you. This is why many Americans prefer direct-to-consumer testing with DNA companies.
The truth is that we can never be sure if our data is being breached and sold to Big Pharma until it is. Until we can be sure that testing companies like 23andMe can be trusted with our data, it would be infinitely easier to consult your doctor or physician about DNA-related concerns.
Nadia Chapman is an Australian freelance writer and journalism graduate. She writes to enlighten others in the health and wellness space. She also writes blog posts on Medium about womanhood, sex, relationships and mental health. Connect with her on Medium @nrchapman.
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