WholeMe registration is now open.

WholeMe: Genomics 101

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  • 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, participants must go to one of the available locations to complete the enrollment process. There is no cost to join the study.

Participants are able to choose a date and time to reserve an appointment at one of the available locations or come as a walk-in. The full list of dates and locations is posted under Frequently Asked Questions - General. 

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.
    • If you don't have one, you must bring a government issued identification card AND show proof of Florida residence (i.e. current mortgage statement/bill, current homeowner’s insurance policy or bill, current automobile registration or insurance policy, current utility bill, or current mail from financial institutions, such as banking statements, no more than 2 months old. P.O.Box addresses are not acceptable)
  • 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 or call Call407-303-2091.

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

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.

If you have been diagnosed with FH, you can find more resources at the AdventHealth Cardiovascular Institute

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AdventHealth Medical Fitness Programs

Learn how to exercise safely and effectively. The medical fitness program at AdventHealth Sports Med and Rehab offers a wide-range of services to help you live healthy and happy. For more information, click here or call Call407-303-8080.

Bariatric Surgery and Metabolic Medicine

With our free online seminar instantly accessible in English and Spanish, it’s time to start the journey toward achieving your weight-loss goals — and living the life you’ve always imagined. For more information, visit ObesityInfoSession.com.

Keith Kim, MD

Dennis Smith, MD

Dietitian/Nutritional Counseling
Mental Health

At AdventHealth Medical Group we have an expert team that cares about you. 

Catherine Longa, PhD

Cassandra Cespedes, PsyD

Michael Westerveld, PhD

Veneshia Campbell, LMHC

Amanda J. Mark, PsyD

Benjamin L. Johnson-Markve, PsyD

Charles J. Lammers, PhD

Ivan Rodriguez-Flores, PsyD

Jodi D. Nadler, PhD 

Veronica Thornton, PhD

  • AHMG Psychiatry at Winter Park                          Call407-896-8097

Murtaza Syed, MD

Nataliya A. Gulyayeva, MD

Vidhyalakshmi Vanugopal Jaishankar, MD

Kevin Vankorlaar, LMHC 

Victoria Henry, LMHC   

Smoking Cessation Programs

The following locations have special programs designed to help you quit smoking.

  • AdventHealth Celebration                         Call407-303-4639
  • AdventHealth East Orlando                       Call407-303-6830
  • AdventHealth Orlando                                Call407-303-1967
  • AdventHealth Winter Park                         Call407-646-7070
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.

Frequently Asked Questions - General

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What is WholeMe?

WholeMeis 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. WholeMeis 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.
    • If you don't have one, you must bring a government issued identification card AND show proof of Florida residence (i.e. current mortgage statement/bill, current homeowner’s insurance policy or bill, current automobile registration or insurance policy, current utility bill, or current mail from financial institutions, such as banking statements, no more than 2 months old. P.O.Box addresses are not acceptable)
  • 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 are the locations available to enroll in the study?

Whether you've registered for an appointment or you would like to come as a walk-in, our team will be available the following dates at each of the locations.          

Locations Dates
Orlando - 2600 North Orange Avenue. Orlando, FL August 12, 2019 - September 13, 2019
Celebration - AdventHealth Celebration Nicholson Center
                          404 Celebration Place, Celebration, FL  USA 
                          Education Conference Room 2

September 15, 2019 - September 20, 2019

Orlando - 2600 North Orange Avenue. Orlando, FL September 22, 2019 - September 27, 2019
Altamonte - AdventHealth Altamonte Family Resource Center
                        651 East Altamonte Drive. Altamonte Springs, FL 32701
September 29, 2019 - October 11, 2019
Waterman - AdventHealth Waterman Mattison Conference Center
                        1000 Waterman Way, Tavares, FL 32778

October 16, 2019 – October 18, 2019

Registrations are now open!

Daytona - AdventHealth Daytona MOB Classrooms A/B
                    301 Memorial Medical Pkwy, Daytona Beach, FL 32117

October 21, 2019 – October 23, 2019

Registrations are now open!

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

What are the enrollment centers' hours of operation?

You are welcome to come as a walk-in to one of our Central Florida locations - at Orlando, Celebration and Altamonte-  to enroll in the WholeMe study. Our regular hours of operation are listed below. 

Sunday

12:00 pm - 4:30 pm 

Monday

11:00 am - 4:30 pm

Tuesday

2:00 pm - 7:30 pm 

Wednesday

2:00 pm - 7:30 pm 

Thursday

7:30 am - 1:00 pm

Friday

7:30 am - 1:00 pm

If you plan to come to one of our locations in the north region, please note we have special hours of operation. 

Waterman Wednesday, October 16, 2019 11:00 am - 7:00 pm
Waterman Thursday, October 17, 2019 9:00 am - 4:00 pm
Waterman Friday, October 18, 2019 7:00 am - 1:00 pm
Daytona Monday, October 21, 2019 11:00 am - 7:00 pm
Daytona Tuesday, October 22, 2019 9:00 am - 4:00 pm
Daytona Wednesday, October 23, 2019 7:00 am - 1:00 pm

 

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 or call  Call407-303-2091 with additional research questions. 

Frequently Asked Questions - Privacy

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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.