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The Gene Health Project at WellSpan

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Better health care is in your genes

What is The Gene Health Project?

The Gene Health Project is a community health research program brought to you by WellSpan Health. The project looks at genetic factors that may influence a person's health. Its aim is to help improve access to personalized health care and support new research discoveries for our community.

The Gene Health Project is inviting Pennsylvania residents, visitors and community members from all backgrounds, aged 18 years and above, to take part in the project. Participants will receive a no cost genetic test that may determine their potential risk for heart disease and certain cancers. Health insurance is not required.

Program benefits

Though we may not know all the details of our family's health history, our genetics may help us better understand our inherited risk for some cancers or some heart disease. Knowing if you are at increased risk can help you and your doctor personalize your health care and plan for a healthier future.

After your DNA sample has been collected, we send it to our partner Helix for DNA analysis. You may learn about your inherited risk for:

  • Common cancer syndromes (including hereditary breast and ovarian cancer and colorectal cancer related to Lynch Syndrome) 
  • Heart disease (including very high cholesterol levels, also known as familial hypercholesterolemia)
  • Participants also have the opportunity to learn about their regional ancestry and genetic traits (like caffeine sensitivity and lactose tolerance)

How to participate

To participate in this community health research project:

  1. Visit the enrollment website created by our partner Helix.
  2. You will be asked to confirm your identity on the next step by logging into your MyWellSpan account.
    • If you received an invite to join The Gene Health Project in your MyWellSpan account, you may also click the link in that message to take you to the enrollment website.
  3. After the login to your MyWellSpan account is complete, you will be sent to Helix’s enrollment website where you can learn more about The Gene Health Project. The website will also show you next steps on how to enroll.
  4. You will be asked to confirm you are eligible and provide informed consent by reading and signing the research consent form.
  5. You will then learn the next steps for how to provide a small blood sample for DNA collection at one of our WellSpan labs. The visit should only take about 10 minutes.

Further information can be found in our FAQs.

If you do not have a MyWellSpan account, you can create one at MyWellSpan.org.

Enroll now

Create a MyWellSpan account

You will need a MyWellSpan account to schedule your blood draw.

If you prefer to review the research consent form on paper, you may complete the interest form and The Gene Health Project study staff will help you with next steps.

Getting the results

It may take 6-8 weeks to get your results. When your results are ready, we will send a copy to you in MyWellSpan, to your electronic medical record and to the WellSpan study team. The results may show whether you have an increased genetic risk for certain heart diseases or cancers.

About 1 to 2 people out of 100 will have a genetic variant that may put them at risk for one of the conditions reported as part of this project. If you're found to have an increased risk, a WellSpan study team member will contact you to offer the opportunity to make a no-cost appointment with a genetic counselor to discuss your results. A genetic counselor is a medical professional specifically trained to help you understand how your genetic information may impact your health or your family's health.

Additionally, outside of the research project and if applicable, you will be offered a clinic visit with a physician (or an advanced practitioner) that is familiar with these conditions. Since this visit is outside of participation in the research program, any clinical visits will be charged to your health insurance, and out-of-pocket expenses from your insurance coverage will apply accordingly.

Creating an optional free account with our partner Helix provides access to additional information, such as your ancestry and specific traits you've inherited.

The Gene Health Project will always take great care to protect your privacy. Your results are kept strictly confidential. Further information can be found in our FAQs and consent form.

Helping our community

The information you contribute to The Gene Health Project (information from your medical record and your DNA sample) will be used by researchers to study a wide range of questions around how DNA may impact health and what may cause certain diseases, and to learn more about how best to treat them. We will never share any personal data beyond what you have consented to. All participants will receive updates on our research study.

Partners in research

The Gene Health Project is a collaborative research effort between:

WellSpan Gene Health

WellSpan Health – South Central Pennsylvania's leading health care network, with over 220 health care locations. WellSpan is working to improve outcomes by delivering the best clinical care and investing in the advancement of groundbreaking research.

Helix

Helix – a leading population genomics company delivering powerful genetic information to you and your doctor for proactive healthcare planning.

For more information, please call a member of The Gene Health Project study team at (717) 356-5395 or GeneHealthProject@WellSpan.org.


Frequently Asked Questions (FAQs)

DNA contains the genetic information that provides the instructions that make you unique, including your physical traits (like eye color) and insights into your ancestral roots, but it also provides health information. There are many similarities in everyone’s DNA, but there are important differences, and your DNA code is unique to you. We are still learning how DNA impacts health. The insights we learn from studies like The Gene Health Project will help us provide more personalized health care for our patients and community.

WellSpan patients, aged 18 years and above, who meet the following criteria are eligible to participate in the research program:

  • Speak English fluently or as your primary language (additional languages will be added soon).
  • Do not have a history of an allogenic bone marrow transplant.
  • Do not have a history of a stem cell transplant.

We want to make sure you understand what is involved in the study so you can make an informed decision about your participation in this project. Signing up is simple and something you can do from home. If you decide to participate, we will ask you to answer a few questions to confirm you are eligible, and then you will have the opportunity to review and sign The Gene Health Project research consent form, which provides confirmation of your informed consent.

The consent process:

  1. Create a MyWellSpan account if you don't already have one. Click for instructions.
  2. Click on the link in your The Gene Health Project email invite, or on this website, to go to the enrollment website from our partner Helix. You will be asked to confirm your identity on the next step by logging into your MyWellSpan account.
  3. After the login to your MyWellSpan account is complete, you will then visit Helix’s enrollment website, where you can learn more about The Gene Health Project and start the enrollment process by answering questions to see if you are eligible.
  4. After your eligibility is confirmed, you can review the research consent form. Please read it carefully. If you have any questions about the study or the form, you can contact The Gene Health Project study staff at 717-356-5395 or GeneHealthProject@wellspan.org
  5. Sign the form and keep a copy for your records. You will then receive an email with next steps for providing your DNA sample.
  6. If you prefer to review a paper consent form, you may complete the interest form (above), and The Gene Health Project study staff will help you with next steps.

Create a MyWellSpan account if you don’t already have one.

Please note: The information provided before informed consent is signed may be stored by WellSpan and/or Helix to keep track of potential participants in order to contact those who are interested and allow consent for only those who are eligible.

No. Research studies include only people who volunteer to participate. It is your choice whether you want to take part in this study, and your decision will not impact your care at WellSpan.

About 1 to 2 people out of 100 will be found to have a genetic variant which may put them at risk for one of the inherited cancers and/or heart conditions that are reported on as one part of this study. These participants will have an opportunity to speak with a genetic counselor, who will explain how to interpret the results and recommend follow-up clinical care. Additional results with clinical importance may also be reported on and made available to you in the future as our understanding progresses.

You are still eligible to participate, and it is possible additional, valuable findings may result from your participation in the project.

Typically, your ancestry and traits results are ready within 6 weeks of the Helix lab receiving your sample. It takes about another month before your health results are ready to view, because extra steps are taken to ensure your results are accurate. Helix will email you when your results are ready to view in the Helix online portal on Helix.com. Additionally, your CDC Tier 1 (Hereditary Breast and Ovarian Cancer, Lynch Syndrome, Familial Hypercholesterolemia) health results will be returned to your medical record, and you will receive a MyWellSpan message notification when that happens.

Creating a Helix account will give you access to additional information and features that are not available in your MyWellSpan account, such as:

  • Dashboard view of the status of your results – from when your sample is received in the lab to when your results are ready.
  • Learning about your ancestry and traits information.
  • Ability to easily download a PDF version of your Helix Health results report when available.

Genetic traits results are based on the likelihood of a trait, not certainty. When a given trait is reported, it is a probability that an individual will express the trait in question. This is based on several genetic markers that have been associated with the trait. Because the result is a probability, there is still a chance that the individual does not express the trait, such as curly hair. There are a couple of key reasons that an actual trait may not match a reported trait:

  • The trait in that individual is determined by a genetic marker not included in our test because it is not yet discovered or is very rare in the population.
  • Other factors such as environmental exposures or gene-gene interactions impact the trait and how it is expressed in an individual and may have greater influences than the genetic marker itself.

This is different than when we identify a genetic change that increases a person’s risk for certain health conditions, like those included in the CDC Tier 1 results that are included as part of the study. For these conditions – hereditary breast and ovarian cancer, hereditary nonpolyposis colorectal cancer, and familial hypercholesterolemia – the clinical community has gathered extensive evidence showing that changes in specific genes are associated with a significantly higher risk for developing the condition. So, we look for those specific, well-established changes.

Unlike traits or ancestry testing where we’re trying to describe patterns, when assessing a person’s risk for health conditions, we’re answering a binary question: Are the DNA changes associated with the condition present, or not?

Yes, your CDC Tier 1 health results will be saved in your medical record, and your healthcare provider will have access to them to potentially help inform your future care plans.

Over time, more health-related results may be available to you as researchers and health care providers learn more about how DNA impacts human health. You may be contacted in the future if more information or samples are needed. However, you do not have to agree to provide more information or additional samples if you do not want to.

If you have received a "test not performed" message, it means your sample was not able to be processed in the Helix lab for DNA testing. There are several reasons why this may occur, and the Helix lab does not determine the specific reason why. Some reasons may be resolved by collecting another sample; therefore, we give you information on how to provide another sample if you have only provided one sample, or the next steps if you have already provided two samples. If you have additional questions about your samples, you may contact The Gene Health Project study staff for more information.

Yes! You’re welcome to participate in other research studies while part of The Gene Health Project.

Yes! You can register for The Gene Health Project even if you’re already taking part in another research study.

Privacy & Data Protection

PDF: Privacy & Security Information Sheet

Your results will not impact your health insurance. The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that makes it illegal for health insurance companies, group health plans and most employers to discriminate against you based on your genetic information.

While the federal law, GINA, provides protection related to health insurance for people who work for employers (with > 15 employees), GINA does not prohibit providers of life, disability and long-term care insurance from asking about and using genetic information. Some companies may require a review of your medical information prior to making a coverage decision. Since the results of genetic testing will become part of your medical record, your genetic information could be used as part of the coverage decision along with your other health information. It is important to note WellSpan Health and Helix do not sell your data to insurance companies. Also, some states have additional protections for these types of insurance, so you may want to learn more about laws in your state. If you already have a policy, new information about your health (including genetic information) generally may not be used to deny you continuing coverage under those policies.

The information you contribute to The Gene Health Project will be used by researchers to study a wide range of questions around how DNA can impact health. That means, by agreeing to participate in the study, you may be contributing to future discoveries, and you are agreeing to have your information possibly included in future research projects that are approved by us and by our partner, Helix.

It is important to note that any researcher outside of WellSpan Health will NOT have access to information that may directly identify you. Furthermore, all research proposals will be carefully reviewed and approved to make sure they are ethical and secure and that they protect your privacy.

Your privacy is very important to us, and we take many steps to ensure it is protected, such as:

  • Your information (your genetic information and health records) will be stored in secure databases.
  • We limit and closely monitor who can access your data.
  • We limit who is allowed to see information that could identify you, like your name or contact information.
  • Researchers who have access to your data must be trained and certified to work with this type of research data.
  • You can choose to withdraw and stop sharing your information at any time.

You may withdraw from the study at any time. Your decision to withdraw will not result in any penalty or loss of benefits and will not affect the medical care or benefits to which you are otherwise entitled.

To withdraw, please send an email to the WellSpan study team at GeneHealthProject@wellspan.org.

If you withdraw from the study, you will no longer receive any emails or other communication as part of the study. Any information that has already been added to your medical record will remain in your medical record. However, no new information from the study will go into your medical record. Your withdrawal from the project will be appropriately noted in your medical record.