By Lena Huang, LunaDNA Contributor

Over the past few decades, scientists and researchers have made great strides in understanding how to use genomic data to drive important medical discoveries.

However, as the scientific community continues to gain access to genomic data at rapid speeds, concerns about the privacy of that data are emerging. Today, there are hundreds of companies that offer genetic testing for thousands of disease-causing genes. Many of these companies also offer whole-exome sequencing, in which all of an individual’s protein coding genes are analyzed for mutations that may cause disease. While this testing can save lives, it also creates a large amount of data that may or may not be secure.

Over the past few decades, scientists and researchers have made great strides in understanding how to use DNA data to drive important medical discoveries. However, as the scientific community is beginning to gain access to more data than ever before, concerns about the privacy of that data are emerging.

Today, there are many companies that offer genetic testing for disease-causing genes. Some of these companies also offer whole-exome sequencing, in which all of an individual’s protein-coding genes are analyzed for mutations that may cause disease. While this testing can save lives, it also creates a large amount of data that may or may not be secure.

DNA data plays a significant role in accelerating medical breakthroughs, so it’s no wonder why more tools are becoming readily available to drive discovery. Advances in technology allow doctors to analyze genetic data quicker and can be used to discover a person’s risk for developing disease, including getting neurological diseases, such as Huntington’s disease or Alzheimer’s disease. Although the advances in health technology have allowed people to better understand their risk for certain conditions and diseases, this information could be used adversely if it falls into the wrong hands.

For example, what if an insurance company could discriminate if they knew a person was at a greater risk for arrhythmia, stroke, or heart attack? What if an employer could fire an employee if it discovered that person was genetically predisposed to developing dementia in the next 10 years? What if an employee did not know his or her employer had access to this genetic information?

Sadly, cases of genetic discrimination are already happening. In 2012 in Palo Alto, Calif., Colman Chadam was asked to transfer middle schools because he was a carrier of cystic fibrosis (CF), even though he was unaffected by the disease. Two children with CF were already attending the school, and because individuals with CF should avoid contact with others who have the disease due to cross infection, their parents petitioned the school district for Chadam to be transferred. Chadam’s parents filed a genetic discrimination lawsuit so he could attend the school.

In 2012, employees of Atlas Logistics Group Retail Services in Atlanta were asked to submit to a cheek swab in an attempt to identify who had been vandalizing one of its warehouses. Two employees recognized the dangers of submitting their personal genetic information and learned that they shouldn’t have to under the Genetic Information Nondiscrimination Act (GINA). GINA makes it illegal to discriminate against employees or applicants because of genetic information. GINA also states that it is “an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee.”

How can we avoid potentially dangerous situations involving our own DNA? It is up to individuals to be informed and do their research on the companies that store and use their data.

So before sending in a saliva sample or DNA data, be sure the company you’re sending it to will strip all information of personal identifiers. Make sure any company that you send data to understands the importance of privacy and will keep your data secure. Understanding how companies plan to use your data not only allows you to maintain control but also helps you avoid situations where your personal information ends up in the wrong hands. Read the privacy and terms of use policies when your personal data is involved.

The control of data privacy is all about being able to decide who can access your data, under the conditions and for the purposes that resonate with you,” says Scott Kahn, Chief Information Officer at LunaPBC. “Isn’t this a better model of control than having institutions make these decisions for you?”

LunaDNA takes your privacy seriously. All personal information is removed and de-identified from any health or DNA data that is given to LunaDNA. Personal information is stored on a separate database from the health data so that there is no connection. All data is securely encrypted to protect your privacy. Finally, you are in control of your data, and it never leaves the LunaDNA platform. Researchers can only access the de-identified data on the platform and cannot export the information. You can choose to access or delete your information at any time.

Discoveries depend on research which relies on data. We think data use should permissioned by you. Contributing to science by sharing health and genetic information will allow researchers to perform important studies that are needed for medical breakthroughs. During this exciting time, remember that while sharing DNA data is absolutely vital to advancing the field, it is equally important that you share it safely.

Directly drive health discovery by joining the Tell Us About You study. The more we come together to contribute health data for the greater good, the quicker and more efficient research will scale, and improve the quality of life for us all.  

Click here to get started.