Helix Data Download Consent

Last modified: December 20, 2017

  • What is your Full Data Set? What can you do with it?
  • How to get your Full Data Set
  • Benefits
  • Risks
  • Limitations
  • Questions about your Full Data Set

When you use Helix, you put your trust in us. Our goal is for you to always feel informed, empowered, and respected during your Helix experience.

We believe everyone has a right to access their Genetic Information, but we also think it is important for you to consider the benefits, risks, and limitations of getting your Full Data Set (as described below). Please take the time to read with care.

If you have questions, we’re here to help. You can contact us or call 1-844-211-2070. Any terms we don’t define here are defined in our Terms of Service or our Platform Consent.

What is your Full Data Set? What can you do with it?

Your Full Data Set is your sequenced DNA that Helix derived from your saliva sample and stores for you to use with DNA Products. It consists of your Exome+ data, but it does not include interpretations of your data. This type of data is often called your “raw data.” If you choose to purchase your Full Data Set, it will be provided to you in a form that you can download. Helix makes the data available as a gVCF file.

What you do with your Full Data Set is up to you. However, you should always be careful about where, how, and with whom you share your Genetic Information, including your Full Data Set.

How to get your Full Data Set

To access your Full Data Set, Helix must have sequenced your Exome+ data. If you are still waiting for Helix to sequence your DNA, you will not yet be able to download your Full Data Set.

There is a fee to access your Full Data Set. That is because the cost of the Helix DNA kit does not reflect the actual cost to sequence your DNA. To allow for greater access to genetic insights in the Helix Store, Helix absorbs much of the initial cost to sequence your Exome+. The fee for  you to download your Full Data Set reflects the value of this type of raw data set and the investment incurred by Helix to sequence and store your Genetic Information.

You can download your Full Data Set after you agree to this Data Download Consent. Helix suggests that you use a laptop or desktop device due to the size of the Full Data Set file.

Benefits

Whether you benefit from getting your Full Data Set depends on how you use it. If you donate your Full Data Set to research, you likely won’t get any direct benefits. Tools exist outside of Helix that allow you to upload your data and look more closely at parts of your Full Data Set. While these tools are not intended to be used to take medical action, there is a chance you could learn something useful about your DNA. However, there are potential risks to sharing your Full Data Set (see Risks of using third party analysis tools below).

If and how you benefit from your Full Data Set may change over time. As your needs and interests change during your life, some uses of your Full Data Set may become more or less helpful. You may benefit in ways that we can’t predict today.

Risks

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. It is always important to carefully review the policies (privacy, terms of service, consent) for any service you may choose to use.

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. Using third party tools to analyze your Full Data Set does not replace interpretations performed by qualified professionals. Some of the information you could learn may not have valid health implications for you and your family. For example, third party tools can have much higher false positive and false negative rates than established clinical labs.

You may want to discuss your options or consult with a qualified medical or genetics professional and ensure you receive reliable interpretation services for any questions about your health or that of your family.

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.

 

Limitations

Your Full Data Set contains your Exome+ data. Like we describe in our Platform Consent, your Exome+ includes your whole exome and hundreds of thousands of other select DNA regions that may provide useful data. There may be other useful information in your DNA that is not included in your Exome+ or Full Data Set.

Our Exome+ assay does not perform at the same level across all regions of the exome. Regions that are hard to sequence my not have robust coverage. Only variants flagged with PASS are clinically validated and within the analytical range.

The variants in your Full Data Set have not been confirmed with an independent technology. Despite the high standards of our Exome+ assay, some variants may be missed or incorrect.

Your Full Data Set does not have any interpretations of your data. Neither Helix nor our Partners are responsible for any insights you independently get from your Full Data Set.

From time to time, Helix updates how we produce Exome+ data. When you pay to download your Full Data Set, you will be able to download the most recent version of your data that we have stored at that time. If we later produce an updated version of your data, we will make this version available to you. We may update the version of your data because of a product you bought or a wider update we do.

Looking at your Full Data Set cannot tell you everything about yourself. Most traits are due to a mix of your DNA and other factors. These factors could include your lifestyle, your environment, or chance.

You can only download your Full Data Set in the file format (or formats) we provide. If you try to change the file type of your Full Data Set after you download it, you may lose some of your data.

Though not likely, your Full Data Set could have some errors. In some cases, errors can occur when we sequence your DNA or read the stored Genetic Information. Helix has many quality control steps in place to find errors when they occur.


Questions about your Full Data Set

If you have any questions about this consent or obtaining your Full Data Set, please contact Helix Customer Care:

Contact us

Phone: 1-844-211-2070

To get your Full Data Set, you must agree to this Data Download Consent. By doing so, you accept all the risks of getting your Full Data Set. If you want to see this consent again later, you can always do so from the Full Data Set page.