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Growth of Direct-To-Consumer (DTC) Genetic and Genomic Testing

Doctorpedia Editorial Team Doctorpedia Editorial Team April 22, 2021
Medically reviewed by Susan Kerrigan, MD and Marianne Madsen

The “Golden State Killer” killed 13 people and raped nearly 50 women across California between 1976 and 1986. It looked like he would get away with it all until police tracked the suspect, Joseph James DeAngelo–through his family tree.

 

Police stated the crime scene DNA was compared against one of the genealogy sites that have lately become popular—databases filled with the profiles of people who have volunteered their genetic codes in the hope of discovering their relatives and ancestors. GEDmatch, a free service, confirmed that police used it to identify DeAngelo.

 

This is just one of many ways genetic testing  has transformed our world; you can determine if you carry a transmissible disease, investigate your ancestry, or check the advisability of a sexual relationship, among other uses. The process for doing so is getting easier all the time, helped along by a number of service providers specializing in what is called Direct-To-Consumer (DTC) Genomic Testing. 

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Genetics - Genome

Genetics - Genome

Background 

 

The process of genetic testing originated as a tool exclusively for researchers, and public perception of it has remained largely unchanged. For the most part, it is reserved for researchers, health care providers, and laboratory testing, with the individual whose genes are in question having little to do with the process. 

 

Because massed genetic data can be used to create a profile of how any individual trait will act or develop in given circumstances, it is easily monetized; those in possession of such databases can sell it to actuarial services for use in predicting consumer trends of all kinds or use it in predicting profits for their own goods and services. 

With the advent of mass data collection that has accompanied the development of the digital era, many people have become exceptionally sensitive to collection of any of their personal data, genetic information included. As awareness of monetization of genetic data grows, the world has seen a complementary trend of growth in direct-to-consumer testing. 

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DTC Testing

 

In a DTC test, the test is not processed by a middleman (such as an insurance company); instead, the person being tested submits their genetic sample directly to the laboratory for analysis. In turn, the results are returned directly to the test subject, never passing through any other body, such as a healthcare professional. This holds true both for a gene test, in which the subject is informed of hereditary conditions of note, and genome tests, which focus on the complete gene sequence and how it makes their body work. Both can reveal important genetic information that might cause a subject to change their lifestyle and habits; with DTC testing, they can do so without fear, for example, of being refused credit due to a hereditary tendency towards a younger age of death. 

 

Growth

 

The usefulness and availability of DTC genetic testing has created a growth spurt for the industry; the number of applicants has doubled in recent years, reaching well over 12 million test subjects, with 246 companies providing the service just last year. Companies compete for faster turnaround times, more accurate and detailed analysis, and a broader range of clientele, all spurring the development of better genetic testing faster than the general healthcare industry ever managed. 

 

This has brought with it some drawbacks: test subjects assume the risk of their chosen provider using an improper testing procedure and are putting their data in the hands of an eminently for-profit entity. Relatively lax regulation has actually caused one period of reform in this industry, after authorities took note of the damage unregulated testing could cause. While there is now more oversight than there once was, the consumer is still taking a greater risk than with a traditional non-profit provider. 

 

Conclusion

 

DTC genetic testing cuts out larger government or corporate entities from genetic testing, keeping the consumer’s data out of large databases and giving them more control over who sees it and why. While this is a heartening trend for individual rights and privacy, its current status as a developing industry means that consumers should still exercise a healthy amount of caution when signing up to be tested–even for those not wanted by the law. 

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