Genetic testing is a booming market. According to reports as of April 2018, more than 15 million people have taken a direct-to-consumer genetic test. And with more affordable prices and improved insurance coverage, they have become very accessible.
Many 83bar partners at are making it easy for consumers to access their DNA using simple diagnostic techniques. With the growing number of applications for genetic tests for early detection and prevention of cancers and other genetic diseases, the value of the market is projected to continue increasing.
And with the growth of consumer testing markets, the opportunity to draw insights from this data for research and potential new treatments for numerous diseases is compelling. However, doubts remain. It’s very important that patients are informed about all the intended uses of their data including if the data might be shared with other parties.
At 83bar we take our commitment to data privacy and ownership extremely seriously. Patients are always informed and have a right to decline such data sharing. As the potential for data to advance drug development increases, we’re mindful of the concerns patients would have on how their data is stored and used.
Patient privacy and the rights of the individual to control their data are also key. Obtaining informed consent is essential with genetic testing of any type, especially DTC testing. In our communications and campaign methods, patients are always made clear on the risks and benefits of the test, the confidentiality provisions, and the expected accuracy of the genetic results, any planned uses for the data, and what results may be shared with them.
Confidentiality and privacy present significant ethical issues as well, experts say. Genetic information can be important to healthcare decision making, life planning, and family relations. It’s therefore essential that providers of DTC genetic testing and their partners, like us at 83bar, have strong security protections in place and ways to inform patients of potential privacy issues that may arise. At 83bar our nurse call network includes genetic counselors trained in educating and counseling patients on the implications of their test results.
In summary, the popularity of DTC testing highlights a growing interest and willingness to participate in genetic testing, but the pharmaceutical industry and its partners like 83bar must reflect upon these cautionary tales and approach the use of genetic testing with an ethically minded patient focus.