General risks
There are minimal risks associated with downloading your Full Data Set. The data provided to you in the gVCF file is not human readable. Analyzing your Full Data Set requires other tools outside of Helix (see below). Further, the file does not contain any interpretations or insights based on the data.
As with any data about you, you should always be cautious about how and with whom you share your Genetic Information. Even if you give a copy of your Full Data Set to someone you trust, they could use your data without your knowledge or consent. In addition, what can be learned from your Full Data Set is changing all the time with advances in science and medicine. Anyone that you provide access to your Full Data Set may learn new insights from your data in the future that are not possible now.
Under the Genetic Information Nondiscrimination Act, (GINA), no employer with at least fifteen workers can ask for your Genetic Information. Neither can any health insurer. Some states may have safeguards for your Full Data Set. You should be aware of the laws in your state. Please see our FAQs for more details.
Risks of using third party analysis tools
You should be careful where and with whom you choose to share your Full Data Set.
Some online tools exist for looking at your Full Data Set. Helix makes no recommendation as to third party tools and it is entirely your decision with whom you decide to share your Full Data Set. These tools vary in risk level. It may be hard to assess third party tools. For instance, these tools may have issues with:
— Security & privacy (e.g. by holding onto your Full Data Set for their own use);
— Quality (e.g. by not giving you validated or correct insights);
— Support (e.g. by not having a way to ask qualified professionals questions); or
— Usability (e.g. by not taking gVCF files).
By using some tools, you could learn something about yourself that you didn’t want to know. For instance, you could find out that your family’s ancestry is different from what you believed. You could also find out that you were adopted.
These tools could also give you information about possible health risks that may concern you. Since you share DNA with your blood relatives, these learnings could also affect them. Not all insights provided through these tools are as well studied or as useful as those curated through the DNA insights provided through the Helix Store. Some of the information you could learn may not have valid health implications for you and your family. You may want to discuss your options with a qualified medical professional (like a genetic counselor) before or after you get your Full Data Set.
Helix and our Partners have strict measures in place to secure your data while we store them. But, neither Helix nor our Partners can protect your Full Data Set once you download it. From that point on, it is up to you to keep your Full Data Set secure, and you agree that Helix will not be liable for lost, improperly accessed, or stolen data in your possession.