WholeMe registration is now open.

WholeMe: Genomics 101

1 items. To interact with these items, press Control-Option-Shift-Right Arrow.
  • With Genomics, your doctor can truly personalize your health care as well as help prevent, diagnose and treat serious health risks.

Genomic Testing
Feel Empowered

WholeMe

In partnership with Helix, a personal genomics company, we are launching a groundbreaking project – WholeMe, the first study of its kind in Florida.

Participants will learn about traits that may impact their daily life, such as lactose tolerance, caffeine metabolism and sweet tooth. The DNA will also be evaluated for the genes linked to familial hypercholesterolemia, known as FH – a genetic condition that causes high cholesterol. If left untreated, it can lead to a heart attack, even in young adults.

Individuals identified with FH will complete a confirmatory blood test and one session with a genetic counselor. In addition, they will be connected with one of our cardiologists to take preventive measures to benefit their health.

Our researchers hope to show how genomics can be successfully integrated into health care to prevent, diagnose and treat diseases and empower consumers with potential life-saving information about their health.

Logo for Helix

Join WholeMe

Ten-thousand people will have the opportunity to join the study. While it's open to all adults who live in Florida, the enrollment sites will be based in the Orlando area. There is no cost to join the study.

Starting on July 24, participants will be able to choose a date and time to reserve an appointment at one of the available locations.

The enrollment process takes up to 1 hour and needs to be completed in person. The main requirements to join the study are:

  • Be an adult (18+ years old)
  • Have a government issued Florida Identification card
  • Be able to read and understand English
  • Have a working email address

Please remember no drinking, smoking, eating, chewing gum/mints within 30 minutes of providing your saliva sample.

Please note Helix may not be able to sequence your DNA if:

  • You have previously had a bone marrow transplant
  • You have had a blood transfusion in the last month
  • You have had recent chemotherapy treatment in the last 3 months
  • You have an active diagnosis of a hematological (blood) cancer

If you have questions regarding WholeMe, please contact our research team at WholeMeFlorida@AdventHealth.com.

A female patient fills out paperwork for her doctor appointment.

WholeMe Traits

By participating in WholeMe, in addition to testing your DNA for FH, you will be able to find out about your ancestry traits and other 22 personal genetic traits that will help you get to know you at a whole different level.

  • Asparagus Odor Detection
  • Bitter Taste
  • Caffeine Metabolism
  • Cilantro Taste Aversion
  • Circadian Rhythm
  • Coffee Consumption
  • Delayed Sleep
  • Earwax Type
  • Endurance vs Power
  • Exercise Impact on Weight
  • Eye Color
  • Freckling
  • Hair Curl & Texture
  • Hand Grip Strength
  • Height
  • Lactose Tolerance
  • Sleep Duration
  • Sleep Movement
  • Sleeplessness
  • Sweet Tooth
  • Tan vs. Sunburn
  • Waist Size

Frequently Asked Questions - General

12 items. To interact with these items, press Control-Option-Shift-Right Arrow
What is WholeMe?

WholeMe is a first-of-its-kind DNA study in Florida that will empower consumers with potential life-saving information about their heart health. Ten-thousand people will have the opportunity to join the WholeMe study, in which Helix will evaluate their DNA for the genes linked to familial hypercholesterolemia, known as FH.

Why are we doing this?

From disease prevention to diagnosis to treatment, genomics is the future of medicine. Genomics will be an essential component of health care not just for the individual, but for our greater community as we focus on wellness and preventative care. The implications of genomics programs are significant for today’s patients, and importantly, the future of Florida’s health. WholeMe is an important first step in our genomics program, and the study will:

  • Advance screening for heart disease
  • Engage the community and increase their awareness of genetics and genomics in their health
  • Learn how consumers respond and learn if the information influences their health decisions
  • Determine if knowledge is power for the consumer
What are we evaluating?

We will evaluate participants’ DNA for the genes linked to familial hypercholesterolemia, known as FH. In addition to the FH screening, participants’ will learn about other areas of their health such as lactose and gluten tolerance, magnesium and calcium levels, and their ability to adapt to arctic climates.

Who can join the study?

To participate you must meet all of the following:

  • Age 18 or older
  • Able to provide informed consent
  • Able to read and understand English
  • Have a government issued Florida identification card or driver’s license
  • Have a working email address
  • Willing to create Helix and Admera Health accounts
  • New to Helix platform and willing to accept Helix’s and Admera Health’s terms and conditions, privacy policy, and platform consent
  • Willing to receive genomic results for FH (present) & additional genomic results that may be helpful for clinical treatment (future research)
What’s familial hypercholesteremia?

FH is a life-threatening genetic condition that causes high cholesterol. If left untreated, it can lead to a heart attack, even in young adults. FH requires more aggressive treatment as it is more serious that having high cholesterol caused by your diet.

If I have familial hypercholesteremia, will I have a heart attack?

If left untreated, FH leads to early heart disease, heart attacks and atherosclerosis (the narrowing and blocking of blood vessels). Early diagnosis and treatment are key. (Source: FH Foundation)

If I don’t have familial hypercholesteremia, does that mean I will not have a heart attack or stroke?

FH is just one genetic condition and the absence of it does not safeguard you from heart attack, heart disease or stroke.

If I have FH, do my children need to be tested?

If you have FH, each of your children will have a 50 percent chance of having it. Also, if your sibling has FH and your cholesterol is “borderline” or mildly elevated, there is a chance you could have FH.  (Source: FH Foundation)

How long will the study last?

Registrations for WholeMe will remain open until we reach 10,000 participants.

It will take 4 to 8 weeks for all participants to receive their results once they go through the enrollment process and provide their saliva sample. 

Researchers will check in with all participants at the one and six month mark after they receive their DNA results.

 

Is there any cost to the consumer?

Participation in the research study is free. Participants will receive results of the FH screening, as well as the pre-identified areas such as lactose intolerance. Outside the study, participants can purchase additional results through Helix.

 

Can I choose to participate in the study?

Yes.  Participation in this study is voluntary.  You can choose not to take part.  You can agree to take part and later change your mind.  You can ask all the questions you want before you decide.  Your decision will not be held against you.  Study participants may choose to discontinue their participation at any time.

Participants can choose to withdraw at any time, and can choose to terminate their relationship with Helix at any time, including requesting deletion of their data. 

What if I have general research questions about this study?

You can contact the study investigator, Rebecca Essner, PhD, at WholeMeFlorida@AdventHealth.com with additional research questions. 

Frequently Asked Questions - Privacy

14 items. To interact with these items, press Control-Option-Shift-Right Arrow
Who can join the study?

To participate you must meet all of the following:

  • Age 18 or older
  • Able to provide informed consent
  • Able to read and understand English
  • Have a government issued Florida identification card or driver’s license
  • Have a working email address
  • Willing to create Helix and Admera Health accounts
  • New to Helix platform and willing to accept Helix’s and Admera Health’s terms and conditions, privacy policy, and platform consent
  • Willing to receive genomic results for FH (present) & additional genomic results that may be helpful for clinical treatment (future research)
If I have FH, can I be kicked off my health insurance, life insurance, or not be approved for either in the future?

In the unlikely event there is an unintended disclosure of information that can be used to identify you, it could affect your insurability, family relationships, or other legal rights. You should know that there are laws in place to prevent this from taking place. A federal law called the Genetic Information Nondiscrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. GINA does not apply to life insurance or disability insurance. 

If you have additional questions on how your information will be protected, please email the study investigator at WholeMeFlorida@AdventHealth.com.

 

If I have FH, can my children be denied medical or insurance coverage?

Your family is protected by the Genetic Information Nondiscrimination Act (GINA), a federal law that generally makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. GINA does not apply to life insurance or disability insurance. 

If you have additional questions on how your information will be protected, please email the study investigator at WholeMeFlorida@AdventHealth.com.

Is this information incorporated into my medical record?

Not automatically, as WholeMe is a research study conducted outside standard health care. However, should a participant take the information to their provider or seek care as a result of the FH diagnosis, it could be added to your record.

Who owns my genetic test results?

You do.  Participants own and control their genetic test information.

Under Florida law, a person owns the results from testing their DNA. If you agree to participate in this research, you agree to let AdventHealth and its collaborators use your genetic test results for research.

Can law enforcement obtain my genetic test results if I participate in this study?

The Helix database is private, unlike some other DNA companies whose databases are open-source and publicly available (and therefore accessible by law enforcement). Helix does not allow access to its databases. They will only share information if they are compelled by a legal process to do so and seek to limit the scope of data shared. While Helix has not received requests from law enforcement, should such a request emerge it would be published in their annual transparency report. 

If a law enforcement agency were to attempt to obtain your genetic test results from AdventHealth Orlando, we would not disclose those results unless we were ordered to do so by a court. It is unlikely that a court would issue an order to produce your genetic information.

What is a consent form? Why is it necessary?

A consent form is a legal document provided to you as a research participant.  The purpose of the consent form is to provide you with a clear understanding of the scope of the research, your role, your rights, and any risks that may be involved while participating in a research study.  After you sign the study’s consent form, a copy will be emailed to you to save for your records.

It's important to note enrollment in WholeMe is in-person, and our research team ensures each participant has a full understanding of what they are consenting to with AdventHealth and Helix.

Can I choose to participate in the study?

Yes.  Participation in this study is voluntary.  You can choose not to take part.  You can agree to take part and later change your mind.  You can ask all the questions you want before you decide.  Your decision will not be held against you.  Study participants may choose to discontinue their participation at any time.

Participants can choose to withdraw at any time, and can choose to terminate their relationship with Helix at any time, including requesting deletion of their data. 

Who has access to my information?

As part of the study, the following organizations may have access to information about you: AdventHealth Orlando, Helix, Admera Health, and Genome Medical. 

This is a clinical study and participant information is private, as we adhere to federal privacy laws (HIPAA) and the entire study is overseen by an institutional review board (IRB) as governed by the National Institutes of Health (NIH) human subjects research protections. 

Helix does not sell or share a participant's data with any third-parties other than those consented to by the participant in this study. This is consistent with the privacy standards and best practices Helix helped establish for the industry and federal efforts Helix is collaborating on to formally codify such rigorous privacy and transparency practices into law. 

The participants have the power to withdraw from the study at any time and request deletion of their data.

 

How is my information protected?

Study data will be stored in a confidential data repository that meets HIPAA security standards and stored in accordance with applicable local, state, and federal laws.  Individual records will be assigned a confidential ID number and will be separated from your personally identifiable information (e.g. name, address, phone number).  

We will protect your personal information.  There are laws that help us keep your information private.  Helix is a leader in driving rigorous privacy practices for genetic data to ensure transparency, user control and stringent data sharing practices. To review Helix's complete privacy policy, click here

What if I have more questions about this study?

You can contact the study investigator, Rebecca Essner, PhD, at WholeMeFlorida@AdventHealth.com with additional research questions. 

What is Helix's privacy policy?

Helix is a leader in driving rigorous privacy practices for genetic data to ensure transparency, user control and stringent data sharing practices. To review Helix's complete privacy policy, click here

What is HIPAA?

HIPAA (Health Insurance Portability and Accountability Act of  1996) is United States legislation that provides data privacy and security provisions for safeguarding medical information. 

For more information, click here

What does Helix do with the DNA data once the test has concluded?

The saliva samples provided to Helix for testing are subsequently destroyed after sequencing has been successfully completed. Should any extracted DNA be left over, Helix may store in a de-identified manner (meaning there is no identifying information attached such as name, date of birth, etc.) for quality control testing. 

The storage of the data is indefinite, unless a user chooses to close their Helix account and/or have their data deleted. Participants are able to do so at any time. 

When It Comes To Your Health,

Is Knowledge Power?

What if doctors could uncover your risk for disease and help you prevent it? Or determine whether a therapy or dose of medicine will be effective for your specific health needs? What if your health care plan was based on a sample size of 1 – just you?

With genomic profiles, physicians and researchers can determine with unprecedented accuracy if someone is at risk for cancer, heart disease and other conditions.  From disease prevention to diagnosis to treatment, genomics is the future of medicine and will be an essential component of all health care.

Earlier this year, we began laying the foundation for our comprehensive program — AdventHealth Genomics & Personalized Health — which will ultimately provide comprehensive genomics testing, analysis, interpretation and genetic counseling services.

When it comes to treating the whole person, our genomics program will deliver on the renewed focus we promised during the launch of our new brand, AdventHealth. We believe personalized medicine that focuses on the whole person is superior health care and nothing is more personal than your DNA.

At AdventHealth, we believe knowledge is power.

WholeMe Health Resources

6 items. To interact with these items, press Control-Option-Shift-Right Arrow
WholeMe Health Resources

Whether you are seeking to make a change in your health or have been diagnosed with familial hypercholesterolemia (FH), AdventHealth offers a variety of helpful resources to help you get started.

AdventHealth.com/sports-medicine-rehab/adventhealth-sports-med-and-rehab-central-florida-south/medical-fitness Call407-303-8080

Mental/Behavioral Health

AdventHealthMedicalGroup.com

AHMG Psychiatry at Winter Park Call407-896-8097

Nataliya A. Gulyayeva, MD

Murtaza Syed, MD

AHMG Neuropsychology at Winter Park Call407-303-7991

Charles J. Lammers, PhD

Benjamin L. Johnson-Markve, PsyD

Jodi D. Nadler, PhD

Amanda J. Mark, PsyD

Veronica Thornton, PhD

AHMG Neuropsychology at Orlando Call407-303-8877

Michael Westerveld, PhD

Catherine Longa, PhD;

Cassandra Cespedes, PsyD

Smoking Cessation Programs

AdventHealth Celebration Call407-303-4639

AdventHealth East Orlando Call407-303-6830

AdventHealth Orlando Call407-303-1967

AdventHealth Winter Park Call407-646-7070

Obesity Medicine

ObesityInfoSession.com

AdventHealth Medical Group Bariatric Surgery and Metabolic Medicine at Celebration Call407-303-3820

Keith Kim, MD

Dennis Smith, MD

If you have been diagnosed with FH, you can find more resources at the AdventHealth cardiovascular institute. (https://www.adventhealthcardiovascularinstitute.com/)