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Bionews for Participants and Friends of Mayo Clinic Biobank

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Bionews for Participants and Friends of Mayo Clinic Biobank BioNews For participants and friends of Mayo Clinic Biobank ISSUE 19 | SPRING 2021 WELCOME TO THE 2020-2021 In this edition, we will continue EDITION OF BIONEWS our conversation about a research It has been quite a year for all of us. collaboration we announced last year In this issue Like many of you who were asked to called Project Generation in which we 2 Project Generation change directions quickly the Mayo Clinic will soon receive genetic sequencing What you need to know Biobank team responded and quickly data on most Biobank participants. helped to create a Mayo Clinic COVID-19 We are also excited to highlight a new 3 Help us build the future! Pandemic Response Biobank in order form of communication we are piloting, Chatbot experience to provide an immediate repository of called a ChatBot, to help us schedule 6 Community Advisory Board samples for research in this area. This the genetic counselor visits needed to engagement new biobank was formed in part with return the results. (Note, receiving results Hear from one of our members the advice of a Bioethics Task Force that is optional.) considered the ethics of consenting Finally, the Community Advisory Board will If you have a question or comment about donors during a public health emergency. provide an update on both in-person and anything in this edition of BioNews or We will report more on these COVID-19 virtual activities they have been engaged the Biobank in general, please contact related efforts in the next edition in this past year kicking off a new BioNews us. We like to hear from you. of BioNews. series we are excited about called “Every Phone Specimen Has a Story”. 866-613-2386 (toll free) The Mayo Clinic Email [email protected] Biobank continues to 56,000 support many active Biobank participants research protocols and make meaningful 333 contributions to the Projects approved to use Biobank samples scientific literature. To date, 333 projects have been 7 approved to use Biobank samples, COVID-19 related including 7 COVID-19 related projects. projects There have been 217 publications that have come out of these research efforts. Thank you for your response to our most recent survey! Your 217 information contributes to this Publications from important research. research efforts of the 59 genes. We will only contact questions and facilitate scheduling. NOTIFICATION PROCESS Project Generation you if we find something. It’s easy, convenient and quick. WHAT YOU NEED TO KNOW to better manage a disease someone Importantly, for both the Biobank and Q: How will I be notified? In the Autumn 2019 issue of BioNews, already has. And it could help us confirm our participants, it will help us schedule we announced the launch of Project a genetic cause for something in a A: If we find something in your DNA, we the visits with the genetic counselors participant’s health history. Although will first send you a letter in the mail. more efficiently. Our Community Generation, a new collaboration If you have a positive test result: between Mayo Clinic and Regeneron we do not know everything or have This letter will invite you to talk to a Advisory Board has reviewed the Genetics Center. DNA samples from the right tools yet to interpret all the genetic counselor over the phone to Chatbot and give it a thumbs up! 1 Receive and read initial contact all current Biobank participants and an important parts of the genetic code learn more about your specific result. letter from Mayo Clinic Biobank There will be instructions for scheduling additional 44,000 samples from other related to a participant’s health, we Read the letter carefully for instructions a genetic counseling appointment if 2 Receive text message or email Mayo studies will undergo whole exome are able to understand quite a bit. about using a Chatbot to schedule your you do not have a cell phone or email with a link to Chatbot sequencing at Regeneron. Results of genetic counseling appointment. QUESTIONS AND ANSWERS on file with the Biobank. Additional this sequencing will be returned to Mayo 3 Click on the link to interact with We are excited to offer you an information will be included in the for research purposes. In exchange, the Q: What type of results might the Biobank Chatbot’s Genetic Information opportunity to brush up on your initial letter you receive if you test Biobank will share de-identified medical contact me about? Assistant (GIA) genetics, provide us some information, positive. Importantly, you do not need record data with Regeneron. (Participant A: The Biobank will initially return results and schedule your appointment from to learn your results. You can fill out 4 Receive genetic education and Through Project identifying information will not be to participants who test positive for your smartphone or computer. After the refusal form included in the initial schedule a genetic counseling shared). This exchange of information is variants identified in a list of 59 genes. you have received the initial letter, letter and return it us by mail. appointment Generation, key for researchers to make progress on An expert panel from the American we will send you a link to a Chatbot important medical questions related to College of Genetics and Genomics via email or text message. This is an Q&A continues on the following page participants could our health and genetic code. All samples (ACMG) previously identified a list of interactive application that will ask you have an opportunity have been sent out for sequencing. We genes that are well studied and have expect to start receiving data back in clear disease associations. About half summer 2021. of the genes on the list are associated to learn about WHAT IS A CHATBOT? with increased lifetime risks for certain genetic results that About whole exome sequencing: types of cancers. For example, one of Whole exome sequencing refers to a these genes, called BRCA1, increases may be important genetic test that looks at specific regions a woman’s risk for breast cancer to their health. of our DNA that code for genes. Genes from about 12% to up to 85% during are the genetic recipes for life that our her lifetime. Other genes on the list cells use to make a variety of products cause an increased risk for heart A chatbot is an online computer program that (like proteins) for normal development disease due to genetic forms of high simulates a human conversation. Chatbots are and growth. Information about our risk cholesterol, heart arrhythmia, and commonly used for customer service support for certain diseases is most likely to an enlarged heart muscle. There are when online shopping or booking a hotel. be located in our genes. The Biobank genes on the list associated with Chatbots can answer questions and collect researchers can choose to look at certain metabolic disorders in which the body information quickly. We hope the chatbot will make it easy and fast to schedule the phone call genes within the exome known to be stores too much of a toxic substance with the genetic counselor and make the genetic associated with their disease of interest that can lead to organ damage or counseling appointment as beneficial as possible. specifically. See the Spring/Summer 2012 disease. Fortunately, if a person is issue of BioNews, available on our website, aware of their risk, there may be Our chatbot is accessible on any device with an for a description of exome sequencing. things that can be done to detect internet connection, including a smart phone, a problem early and in some cases iPad or desktop computer. The chatbot will Because this research study using the prevent disease. It is estimated that provide education on genetics and genetic Biobank will have genetic sequencing ~3% of Biobank participants will test testing. It will also collect personal and family data on most of its participants, we know positive for a variant in one of these health histories for the genetic counselor to that researchers will discover genetic 59 genes. review ahead of the appointment. The chatbot information that could have significant follows guidelines from both Mayo Clinic implications for the health of some Q: How will I know if I’m one of the and HIPAA (Health Insurance Portability and participants. For instance, a result could participants that tested positive? Accountability Act). tell us a participant is at increased risk for A: The Biobank will contact all participants a certain condition. It could tell us how who are found to have a variant in one 2 3 Q: If I am not contacted, does this mean You can do this now or wait until you I don’t have to worry? are contacted. If you are contacted, A: If we don’t contact you, this could you can refuse to receive your specific mean a few things: result before or during your genetic counseling phone appointment. 1 It could mean we did not find any variants in the genes tested. Q: What if I’m unsure about whether I These genes were derived by should learn my result? experts because they are known to A: We encourage you to meet with affect clinical care. If you are not the genetic counselor. This phone contacted, this doesn’t completely appointment is a free consultation rule out your risk for hereditary provided by the Biobank for all cancer, heart disease or other individuals who have a medically genetic conditions because we are significant result. The genetic counselor only looking at 59 genes. There are can tell you more about the genetic other genes not on this list that may testing that was done and answer your be linked to health risk and disease.
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