HerediGene®: Population Study

Think of DNA as your own genetic set of instructions. This genetic makeup tells your body how to function and gives you the characteristics that make you, you!

How can you tell if someone has a higher risk for disease based on their DNA?

• Using genomics, our scientists can analyze your DNA to look for known disease-causing gene mutations. If these are present, it can often indicate a higher risk for related disease.

How can genomics help prevent disease?

• Knowledge is the first step in prevention! Once we know what diseases you might be more prone to, your Intermountain provider can create a personalized plan of action to help prevent those diseases from developing and catch them at an earlier, more treatable stage.

Who can participate in the HerediGene: Population Study?

• Any person over age 18 within Intermountain Healthcare’s service area (Utah and Idaho)

What is the benefit of participating?

• Together, we may advance healthcare with the HerediGene: Population Study. Your contribution may help improve early detection and new treatment options for future generations of families in Utah and across the globe who are susceptible to diseases such as cancer and heart disease.

How do I participate in the HerediGene: Population Study? What does participation in the study entail?

• Interested individuals can sign up online here or in person at a participating clinic.
  
  
• If you would like to participate but do not have a regularly scheduled blood draw, please sign up here.

• All participants will need to sign a consent form. 
  
  
• Participants will then donate a blood sample. Two vials (about 2.5 teaspoons) of blood are needed to sequence the genome. 

• The sample will be coded anonymously before being sent to our partners at deCODE, who will assist with sequencing and analysis of the results.
  
  
• The sample is then analyzed for risk of disease. If a known disease-causing variant is detected and confirmed, our genetic counselors will work with the participant to discuss the results and the best course of action. 

Who will receive a report on their genetic risks?

• It is predicted that a very small percentage – about 3% of the population will receive a report identifying a known disease-causing variant that we can treat. 

Is it free to participate?

• Yes – the HerediGene: Population Study will cover the cost of sequencing and any confirmatory testing that is needed.

Who has access to this information?

• The data collected during this study will be scrubbed so patient DNA and healthcare records cannot be identified before it is sent to deCODE for sequencing and before it’s utilized in research at both deCODE and Intermountain.
  
  
• Only Intermountain providers can access a participant’s personal health information for healthcare and research purposes, with written consent from a participant. 

• HerediGene: Population Study will use an honest broker system to ensure confidentiality. The purpose of the honest broker system is to establish a neutral intermediary person or personnel between researchers and institutions, the individual whose blood and data were collected, and the healthcare provider who obtained the samples and data, and thereby, has a responsibility to protect protected health information (PHI). PHI will not be sent outside of Intermountain Healthcare.
  
  
• Study records and data will be secured in Intermountain Healthcare’s and deCODE’s laboratories and offices in locked filing cabinets, password protected computers, and password protected network or cloud systems. Stored data records will be routinely checked by the quality control teams to ensure data security.

Does Intermountain make money from my data?

• No. As a not-for-profit health system, Intermountain Healthcare is dedicated to lowering health costs and improving care and quality of life for all. The goal of this study is to make clinical discoveries that will help in preventing health problems that put financial and emotional burdens on our communities. 
  
  
• Any funding received for the study is to cover the cost of collecting and testing samples and providing care for patients. 

How is this different from 23andMe or Ancestry.com?

• These companies use saliva to look at a small part of your DNA to conclude where a person’s ancestors came from. They can use the sample to also predict the risk of a few diseases like diabetes and some cancer types.
  
  
• The HerediGene: Population Study maps a person’s whole genome from top-to-bottom to predict their risk for many health diseases.
  
  
• Through Intermountain’s clinical network, those who have high risk for disease will have access to genetic counselors to discuss results and next steps for treatment. 

 

How does this project empower providers as they treat patients?

• Knowing if a patient has a disease-causing variant may help providers make more informed and personalized care decisions when working with patients.
  
  
• The research derived from this project may help to advance early detection and new treatment options for patients who are susceptible to diseases such as cancer and heart disease.

Why partner with deCODE genetics? 

• Intermountain and deCODE have compatible missions and passions for advancing patient care: deCODE is recognized globally for its 20-year-plus effort to collect DNA samples from the entire population of Iceland. Using their unique expertise and population resources, deCODE has discovered key genetic risk factors for dozens of common diseases, ranging from cardiovascular disease to cancer. Meanwhile, the Intermountain Precision Genomics program has made major advancements in the treatment of patients with end-stage cancer.
  
  
• deCODE genetics is a global leader in analyzing and understanding the human genome and has a proven track record for successfully conducting large-scale DNA sampling programs; deCODE has long sought a partner to translate its genetics research into direct clinical care, which Intermountain is uniquely able to do. The partnership with Intermountain will be enabled by and complimentary to deCODE’s expertise.

What is Amgen’s role in the HerediGene: Population Study?

• deCODE genetics is a wholly owned subsidiary of Amgen that operates in an independent fashion to analyze and understand the human genome. deCODE’s insights into human disease through genetic analysis (based on their existing work and further enabled by this partnership with Intermountain) will provide Amgen researchers the unique opportunity to discover and develop medicines to treat the most serious of human diseases. 
  
  
• Amgen researchers will utilize the data and results from the partnership to gain new insights into human biology and disease which will greatly aid Amgen’s drug discovery and development efforts.

• The ultimate goal of the partnership is aligned and shared between Intermountain, deCODE, and Amgen and that is to change the practice of medicine and treatment of disease to benefit the patients we collectively serve.
  
  
• Together, Intermountain, deCODE, and Amgen have the unique position to help create new forms of diagnosing, treating, and preventing disease.

Why is Intermountain as a not-for-profit working with a for-profit company? 

• Intermountain is committed to serving the population of Utah and our mission of helping people living the healthiest lives possible®. Partnerships like this one bring us even closer to that mission by helping us accelerate discovery.