FAQ Quick Start

• About TapGenes
• Getting Started
• My Family Health Tree
• Genetic Age and Risk Assessments
• Sharing
• Privacy and Data Use
• Partnering with TapGenes
• HIPAA

About TapGenes

What is TapGenes?
TapGenes is a technology platform for families to crowdsource their family health information and receive personalized health risk assessments and recommendations to get the right care and services.

How does TapGenes work?
When you sign up for a TapGenes account, you will first be prompted to create a Family Health Tree, a visual representation of your family and the health conditions that run in your family. You can begin creating your tree manually by answering a few simple questions about your first degree relatives, or by integrating with Facebook, which will automatically pull in your family’s names and relations (but not those funny cat videos, sorry!) . Our Family Health Tree tool will then guide you through a few more simple questions around some of the most common chronic health conditions, just to get your started. After that, you can go back and make changes, add new family members and conditions, as well as much more! You can store all of your family health history, including medications, allergies, and doctors notes in one place with our Personal Health Portraits.

Do I have to have genetic sequencing done?
Nope!... but you can if you want to. TapGenes allows you to see patterns in your family's health history without genetic sequencing. However seeing what runs in your family and your personal risk factors may prompt you to want to learn more about whether genetic testing, and which one, might be right for you. We have resources to help you with that!

Getting Started

How much does it cost?
It is free to create a TapGenes account and Family Health Tree. In fact, we hope everyone signs up and invites as many family members as they want, because the more people who join and share, the more we all benefit! We are currently planning some pretty cool features around personalized risk surveys and environmental conditions that will be part of a future planned “Premium Account” for a small monthly fee, so stay tuned!

Do I have to give you my real name?
Why do you ask? What have you done? Just kidding! TapGenes understands that your medical history and notes are personal and private. That's why we use the 128-bit encryption and the same physical security that banks use -- all to ensure that only you have access to your files on TapGenes. We encourage you to use your real information, and hope you feel comfortable doing so, but we only require an email address to get started (and we’ll never ask for your password), so you can provide as much or as little personal identifying information you’d like.

I don’t know the answers to the onboarding questionnaire, can I still make an account?
Absolutely! That’s the beauty of family “crowdsourcing”! Just creating your account and going through the onboarding questionnaire is a great first step. If you don't know some of the information you can always skip it (or click “no/not sure”). You can come back to it at anytime if you want to make an update. What’s even better is that when you share your TapGenes Family Health Tree with your family, you can give them permission to update it with what they know. They can validate and fill in the gaps so that you get a more complete picture of your family health history.

Is there an app?
Not yet, but there will be! The TapGenes mobile app is currently in development with all the functionality of our website plus some cool new app only features (seriously the TapGenes team is super excited about it!). If you signup for our mailing list, you'll be the first to know when it launches.

Can I connect with Facebook or other third party sites?
We “Like” your question! Yes, TapGenes allows you to connect with Facebook to start your family health tree if you wish and jump start you through the creation of your Family Health Tree. We also have a partnership with FamilySearch to import your genealogy tree directly into TapGenes.

My Family Health Tree

How do I add family members to my family health tree?
Well when a mommy tree and a daddy tree love each other very much, eh wait, that’s not it. When you first create your TapGenes account, you'll be prompted to add your immediate family members (including your parents and siblings) in our onboarding questionnaire. After you’ve finished the onboarding, you can come back at any time and add additional family members by clicking on the person they are directly related to and adding from there. you can watch our tutorial video for additional help.

How far back can I trace my family health history?
You can trace back to your great-grandparents within the Family Health Tree, and we plan to continue to expand our family health tree capabilities in the near future.Want to add great-great-great-great-great-grandma Queen Victoria? No problem! TapGenes can go as far back as you can trace! Currently, you can only view 3 generations at a time on one screen, but just keep recentering on a different generation to see their grandparents, and then their grandparents, and...well you get the idea!

Can I edit a family member’s information?
Yes...if they let you. For family members who have given you “edit” or “admin” permissions to their account you can edit life events, physicians, medications, etc. under their personal health portrait simply by clicking on their profile and locating the information you want to change or add. Check out this tutorial for additional guidance on editing your information.

Genetic Age/Risk Assessments

What does my genetic age mean?
While we know you’re young at heart, (anyone else turning 30 again this year?), your Genetic Age represents your risk profile based on your provided family health history when compared to the average age of others with similar risk profiles. It’s calculated based on the number of close relatives you have with several common diseases. It is not meant to be a diagnosis or a prediction of onset for any disease, but rather a tool to help you understand the importance of your health history, and help you understand that while you can’t change your genetic risk factors, there are many actions you can take now to lower your overall personal risk. To learn more about how we calculate your genetic age and what the number means for you, check out our Genetic Age resource.

Is this a diagnosis?
No, absolutely not. We here at TapGenes are passionate about helping you and your family be healthier, but we are not doctors (well some of us are, but we’re not your doctor, probably). TapGenes Genetic Age is an educational tool, not a medical tool. We always recommend that you discuss the results with your healthcare provider and it is our hope you will use the opportunity to make positive changes to live a longer, healthier life.

I didn’t like my risk assessment score, what can I do?
Kick out your siblings, they were mean to you growing up anyway! We kid, we kid! If you don’t like the results you get for any of our risk assessments or genetic age, you should talk with your healthcare provider about steps you can take to live a healthier life. Your genetics may not be in your control, but your behaviors and environment often are, so start there!

Sharing

Who can I share my family health tree information with?
You can share your family health tree with anyone you choose, though we have a few suggestions:

• Physician
• Caregiver
• Babysitter
• Parents
• Grandparents
• Children

You can set permissions for who sees what by the individual, so you can always share only children’s allergies with the babysitter, your medications a caregiver, and the whole record with your physician, if that’s what makes sense for your family.
Can I share my information with my physician?
Absolutely! You can share your health information with any physician you choose either by inviting them to view your TapGenes account or by printing off a Personal Health Portrait summary to take with you to an appointment. Just like all sharing in TapGenes, you can control how much they are able to see within the privacy settings.

What if I don’t use gmail? Can I still import contacts?
At this time we can only import contacts from gmail, but we hope to expand compatible email clients in the future.

Privacy and Data Use

How can I adjust the privacy settings for a family member?
Within your family health tree, you can adjust the privacy settings for who can see your information for each person you share your tree with by clicking on the lock icon within your Personal Health Portrait. This will let you edit who has what access to what information for your record. See our privacy and sharing tutorial for step by step instructions.

How do you use my data?
TapGenes uses your data to calculate your Genetic Age and risk score for any risk assessments you choose to take. We also use aggregated, de-identified data (read: the resulting summary of everyone’s data, no way to tell who it came from, fed into some pretty cool algorithms) to make our proprietary risk models better so that we can provide you with better, more accurate risk assessments. TapGenes may share the de-identified, aggregate data with third parties, but we will never share your personal identifiable information with a third party without your permission (such as providing you with opportunities to learn more about clinical trials and other services should you choose to “opt in”). See our privacy policy for details.

Who can see my data?
Only you and the people you give permission to (whether it’s your family by sharing your record or us by “opting in”) can see your data. No exceptions, no fine print. You are in control of who sees your data at all times.

What if I want to share my tree but not my risk score, etc.
If you’ve been reading all the FAQ’s in order (which is impressive if you’ve made it this far!) then you’re probably noticing a theme! We are privacy and data security fanatics and want to make sure you know that all your data is yours to share as you wish. You can share your tree without sharing any other information, and vice versa.

Partnering with TapGenes

Do you have an API?
Yes, we have an API that your development team can use to access certain TapGenes data points. For more information, visit our API documentation or contact us using the form below.

I think we should partner on a project, what do I do next?
If you'd like to partner with TapGenes on a project, simply fill out the contact form below with the basic details of the project. We have many opportunities to work with organizations of all sizes. A member of the TapGenes team will follow up with you soon!

I am a non-profit or community organization, how can I get involved?
We are excited that you want to get involved with TapGenes and would love to hear from you! We have many options for working with your community members, from educational series on the importance of knowing your family health history to running information sessions to get your members up and running on TapGenes quickly! Please fill out the form below and a member of our team will be in touch soon!

HIPAA

Does the HIPAA Privacy Rule limit an individual’s ability to gather and share family medical history information?
No. The HIPAA Privacy Rule may limit how a covered entity (for example, your health insurance or doctors) uses or discloses individually identifiable health information, but does not prevent individuals, (hint: that’s you!), from gathering medical information about their family members or from deciding to share this information with family members or others, including their health care providers (through TapGenes, for example). Thus, individuals are free to provide their doctors with a complete family medical history or communicate with their doctors about conditions that run in the family.

Does the HIPAA Privacy Rule limit what a doctor can do with a family medical history?

Yes, if the doctor is a “covered entity” under the HIPAA Privacy Rule. A doctor, who conducts certain financial and administrative transactions electronically, such as electronically billing Medicare or other payers for health care services, is considered a covered health care provider. The HIPAA Privacy Rule limits how a covered health care provider may use or disclose protected health information. The HIPAA Privacy Rule allows a covered health care provider to use or disclose protected health information (other than psychotherapy notes), including family history information, for treatment, payment, and health care operation purposes without obtaining the individual’s written authorization or other agreement. The HIPAA Privacy Rule also generally allows covered entities to disclose protected health information without obtaining the individual’s written authorization or other agreement for certain purposes to benefit the public, for example, circumstances that involve public health research or health oversight activities.

When a covered health care provider, in the course of treating an individual, collects or otherwise obtains an individual’s family medical history, this information becomes part of the individual’s medical record and is treated as “protected health information” about the individual. Thus, the individual (and not the family members included in the medical history) may exercise the rights under the HIPAA Privacy Rule to this information in the same fashion as any other information in the medical record, including the right of access, amendment, and the ability to authorize disclosure to others. (Whew, that was long, sorry, but hey, you asked!)