Gene-testing Services and the Risks Associated With this Practice

gene-testing services

The physical risks associated with most genetic tests are very small, particularly for those tests that require blood samples or a buccal smear. The testing itself does not present any danger to those who are taking it. The risks associated with this process come from how this data is kept safe, as the company which carries out the test, like many other companies, collects a wide variety of other personal data, including information you shared with them such as your name, basic identifiers like your address and email address, and, in some cases, facts about your family and your health. To shed light on the privacy practices of such companies, researchers from Consumer Reports’ Digital Lab evaluated many direct-to-consumer genetic testing companies to find out what happens to the information collected while using them. 

They found out that most of the current testing services potentially collect more data than could be needed to deliver their core service. It was also found out through privacy-policy analysis that when consumers opt into “research”, many are providing third-party access not only to their DNA but also to various other types of data that the company has about you, which possibly includes information about your relatives and family history. It was also noted that most of these companies share non-DNA data that could potentially be used to target ads and develop data profiles on consumers, which would then be sold and spread among other companies in order to target advertising, while users would have little to no tools to help them protect their privacy. 

Although it is true that the ways these companies handle non-genetic personal information are very common across the web (since we constantly engage in practices such as data augmentation and the use of tracking cookies), the information collected about you when you use a DTC genetic testing service can be particularly sensitive. Consumers interested in partaking in such genetic testing services should deeply analyze the services’ privacy policy and be aware of the possible risks to their privacy that this service will bring. Such an intriguing matter still needs the guidance and clarification of professionals with years worth of experience in the field, hence why we will soon host the 111th PIFW: “2023. Investments in BioTech and Pharma. Risks and opportunities,” which will take place on January 26, where dozens of healthcare, pharma and biopharma experts and active investors will join together to discuss this and many other topics that are at the forefront of these industries, such as the use of personalized medicine, how synthetic biology can change the healthcare industry, advances in current treatments and decentralized clinical trials. To be able to join this insightful discussion, be sure to register now at: https://pif.events/registration-form/