Frequently Asked Questions
How does it benefit me?
Your participation will help us understand how genes relate to health problems. This could lead to new treatments for certain diseases through future research.
You will also receive your personal results and learn about:
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Your ancestry
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Any specific findings from a set selected genes that can impact your current or future health. This means that if there is a variation in one of the genes, your physician will be able to use this information in your health management.
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This study is also creating a biorepository, and any specific research on the samples and data that we gather, will be communicated to you separately. All personal information will be removed before sharing your sample or data (with your permission)
How is my data protected?
Your privacy is very important to us and we will take all precautions to protect your data and samples. Here are a few of the steps we will take:
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Information we collect will be stored on protected computers at UCSF. Only authorized personnel will be able to access the information.
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We will remove your name and other direct identifiers (like your Social Security number, date of birth) from your information and replace them with a code. There is a master list linking codes to names. This list is kept secure, and very few people have access to it.
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To work with your health information, researchers must promise not to try to find out who you are.
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We will tell you if there is a data breach.
Still, loss of privacy is a risk of taking part in the 3D Health Study. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but not zero.
How does it benefit my community?
The learning's from this study will help in:
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Incorporating diverse genetic make-ups in research
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Understanding which diseases are more common in a particular ethnic background. And why?
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How to better communicate genetic findings in different populations from different cultural backgrounds.
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Inform doctors and other practitioners on how to better care for patients from different ethnicity.
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Understand the barriers in learning new health information.
Does it cost to participate?
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There is NO cost to you for participating in our study and undergoing the genetic test (whole genome sequencing).
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If we find any genetic variants in genes we investigated, you will be provided genetic counseling upon return of results at no cost and you will be referred to your primary care provider.
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Any follow-up care or treatment by your primary care provider or specialist will be charged in the same way any other healthcare visit is charged.
What is Whole Genome Sequencing?
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Whole genome sequencing (WGS) is a method for analyzing your entire genetic information, not just looking at individual genes.
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Our genes are pieces of information that we inherit from our parents that tell our body
how to grow and develop. Genetic testing like WGS looks at our genes to identify any spelling mistakes, and missing or extra pieces that can help identify future health risks (like risks for certain heart disease, cancer, etc.). The purpose of this study is to understand how to best recruit patients, consent and share the results from this test.
How does COVID19 affect me joining the study?
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Your safety is very important to us and we will take all precautions to protect you through the process. We can complete your enrollment and sample collection remotely. We do not require you to meet us in person or visit a UCSF lab or hospital.
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You can stay home and interact with us via email or phone.
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Here are a few of the steps we will take:
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We will schedule remote consultation via phone or through a secured video conference line.
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All required forms like the consent form and health questionnaire will be sent to you via DocuSign or a secured email.
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We will mail a saliva kit to you to your home address with instructions. It’s a very simple and quick saliva swab. You will get a paid return label to ship your saliva sample to the laboratory performing the WGS test.
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We will contact you when the results are available.