Helix Platform Consent
Last Modified: February 10, 2020
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.
- DNA Products: Products and services that use portions of your DNA. They are offered on the Helix Platform. They may include Helix Insights or insights from DNA Product Partners.
- DNA Product Partners: Other groups that make DNA Products for the Helix Platform. They include medical centers, consumer brands, patient foundations, and more.
- Exome+®: This refers to the proprietary sequencing-based testing that Helix performs on your DNA. Exome+ sequencing includes the part that codes for the proteins that tell your body how to function, as well as other DNA regions that are useful for some DNA Products.
- Genetic Information: Your sequenced or uploaded DNA and any interpretation of the data. We derive your sequenced DNA from your saliva sample. We store your Genetic Information for you to use with DNA Products.
- Helix: Us! When you see the words “we,” “us,” or “our,” we’re talking about Helix.
- Helix Insights: Insights about you provided by Helix based on Helix’s interpretations of your DNA. Helix Insights may be available to you through DNA Products offered by Helix or Partners.
- Helix Platform: The Helix Store plus the processes we use to collect, sequence, interpret, store, and share (with your consent) your Genetic Information.
- Helix Store: Where we feature DNA Products.
- Research Program: Programs organized by groups such as health systems, research institutes, and other third parties with which Helix has partnered.
- Research Partner: Group that is organizing a Research Program.
- Self-Reported Information: Other details about you that aren’t a part of your DNA. It may include details about your health, family tree, lifestyle, and behaviors.
Purpose of the Helix Platform
Helix was founded to empower every person to improve their life through their DNA.
To that end, Helix provides the Helix Platform, which features a number of DNA Products made by Helix or by DNA Product Partners that can give you insights about yourself. Some of them also offer you services based on those insights. From time to time, Helix may also provide Helix Insights through DNA Products. Helix also supports Research Programs offered by Research Partners.
You can use the Helix Platform to browse and buy DNA Products. Over time, new DNA Products will be added to the Helix Platform. You can buy as many (or as few) of these products as you want. Before you buy a product, you’ll be informed what you can expect to learn from it. You’ll also learn what information, if any, will be shared with the Partner offering the product.
You can also join the Helix Platform via a Research Program. If you participate in a Research Program, you’ll be informed about the goals, and what is involved in participating, via the Research Program consent.
Using the Helix Platform
To use the Helix Platform, you must provide Helix your Genetic Information. You can do so in one of two ways.
The first way is to have Helix sequence your DNA. We describe this process below. This will allow you to browse all DNA Products on the Helix Platform.
The second way is to provide Helix your Uploaded Data, which is a service that we may offer from time to time. You can find more details in our Data Upload Consent.
– Providing your DNA
To have Helix sequence your DNA, Helix must collect your saliva. Helix only accepts saliva samples. We do not accept other types of samples. You must use a Helix DNA Kit to send Helix a saliva sample. Please follow the online instructions to send us your sample.
– Getting your DNA sequenced and analyzed
– Getting insights from DNA Products
You choose the DNA Products you want to use through the Helix Store. When you use a DNA Product, you choose to learn about the portions of your Genetic Information that it needs.
Each DNA Product you use will:
- Use portions of your Genetic Information to offer you insights about yourself.
- Tell you what you can expect to receive from the product.
- Ask you to give your consent for that product to look at portions of your Genetic Information.
- Ask you to share some basic details about you, like your age, sex, and email address.
When you activate a Partner’s DNA Product, you allow Helix to share portions of your Genetic Information, Account Information, and Self-Reported Information with that Partners. Helix will share the portions that the DNA Protduct Partner needs to offer you their product(s) and improve their product(s) over time. In some cases, Helix will provide Helix Insights to a Partner to help power the Partner's DNA Product. Helix may work with a service provider to offer the Helix Insight. You can find out which insights a given DNA Product provides in its Product Consent.
You can ask Helix to stop sharing your information with a given DNA Product. You can do so through your Account Settings. For Partner DNA Products, stopping sharing may not close your account for that product. To close that account, you can contact the Partner who offers that DNA Product.
– Getting your Helix Insights
From time to time, Helix may offer you access to Helix Insights. This access may be through a DNA Product or otherwise. If you choose to receive Helix Insights, Helix will use certain portions of your DNA to produce them.
– Giving other information about you
The Helix Platform may also ask for your Self-Reported Information. This information could improve your Helix Insights. In some cases, it could improve the insights you get from DNA Products. It could also support other tools and services through the Helix Platform.
Whether you share Self-Reported Information with Helix is up to you. When you buy a Partner’s DNA Product, Helix may share some of this information with that Partner. The Partner will ask for your consent to use this information when you buy their product. Some DNA Products need this information to function. You control whether you want to share that information with Partners by buying their product(s).
– Helping improve the Helix Platform
Helix may use your Genetic Information or Self-Reported Information as part of an "Aggregated" data set. Information that is "Aggregated" means that it is summary-level and derived from data that has been de-identified and combined with that of other users prior to analysis, and cannot reasonably permit someone to identify you individually. Helix may use these data sets for business or promotional purposes. To use the Helix Platform, you must let Helix use your information as part of these Aggregated data sets.
Helix strives to give you current, reliable, and high-quality experiences. As such, a key way that we will use Aggregated data sets is to improve the Helix Platform. We may do so with our quality control methods. Some of these methods may focus on how we sequence your DNA. Some of them may focus on how we store and send your Genetic Information. Some of them may focus on how you use the Helix Platform. Such information will be used only for Helix’s quality, regulatory, and internal business purposes.
– Taking part in research
You can choose to take part in our research, the Helix DNA Discovery Project. If you choose to take part, your Genetic Information and Self-reported Information would be used for research. You can find more details about the project in our Research Consent.
Closing Your Helix Account
We cannot restore your account if you close it. If you wish to buy new DNA Products or access the Helix Platform, you will need to create a new Helix Account. To do so, you will also need to send in a saliva sample (or provide Uploaded Data). When you close your account, we will archive your information. We will keep it archived for as long as we must to meet our legal and regulatory requirements.
We intend for you to benefit from the Helix Platform. You can do so by learning about yourself from your DNA. What you learn may be useful for you in a number of ways. You might assuage your curiosity or simply enjoy learning about your genetics. You may also be able to apply what you learn to your health, wellness, family planning, and more.
How you benefit may change as your interests, needs, and motivations change through your life. How you benefit may also change as new DNA Products are added to the Helix Platform. You may benefit in ways that we can’t predict today.
You may benefit from participating in a Research Program. Please see the Research Program consent for a description of the possible benefits from participating in the Research Program.
There are some risks that come with using the Helix Platform.
There is a chance you could learn something about yourself that you didn’t want to know. For instance, you could find out that you were adopted. You could also find out something that concerns you about your health. Since you share DNA with your blood relatives, what you learn could also affect them. You may want to discuss your options before or after you get your results. You can do so with your doctor, a mental health professional, or a genetic counselor.
Under the Genetic Information Nondiscrimination Act (GINA), if you work for a company of 15 or more people, your employer may not ask you about your Genetic Information. They are also barred from using any Genetic Information in hiring or other employment decisions. Your health insurer cannot use genetic testing information in decisions about coverage and health premiums.
This restriction only applies to employment and health insurance companies. For example, companies that offer life, long-term care, or disability insurance are not covered by GINA. Neither are the US Armed Forces. Some states have safeguards on top of the safeguards in GINA. You should be aware of the laws in your state and be careful with whom you choose to share your Genetic Information. Please see our FAQs for more details.
Lastly, each DNA Product and Research Program has its own risks, benefits, and limitations. The Helix Platform will give you some details about each DNA Product. Each DNA Product and Research Program will give more in-depth details about it through its Product Consent. You should take care to weigh the risks, benefits, and limitations of each product or program. You may want to talk with a genetic counselor for help weighing these factors. Some DNA Products may give you access to genetic counselors as part of what they offer.
The Helix Platform has some limitations. Some of these are unique to Helix. Some are related to genetics in general. Many of these are also discussed in our Terms of Service.
When we sequence your DNA, we read and store your Exome+. At this time, Helix does not read or store your whole genome. Some of the DNA that Helix does not read could be needed for certain genetic insights.
Your Genetic Information cannot tell you everything about yourself. Your genes are only a part of who you are.
Most traits that DNA Products describe are not deterministic. In other words, your results will often describe your predisposition for a trait. In some cases, factors like where and how you live can affect this predisposition more than your DNA.
DNA Products are based on the current state of knowledge. Over time, more will be known about DNA and how it affects traits. As this knowledge improves, DNA Products may update the results they give you.
Though not likely, your Genetic Information stored by Helix 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.
In some cases, we may not be able to sequence your DNA for technical reasons. There may also be other reasons, such as a bone marrow transplant, missing/extra sections of DNA, or not having enough DNA in your saliva.
It’s possible that some or all of your Genetic Information will not meet our quality standards. For instance, your data may not be complete for some regions we target. In that case, some or all DNA Products won’t be able to use your Genetic Information. These DNA Products will not be available to you.