BioNews For participants and friends of Mayo Clinic

ISSUE 19 | SPRING 2021 WELCOME TO THE 2020-2021 In this edition, we will continue EDITION OF BIONEWS our conversation about a 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 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 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. specific questions about the study. If We also know that most types of after speaking with the counselor you common disease are not caused decide you do not want to learn your solely by our genes and that lifestyle result, you can decline at that time. It is our hope that and other non-genetic factors are studies using the important as well. Q: What kinds of things will the genetic 2 It could mean we may no longer counselor talk to me about? the genetic counselor will help you talk have a sample to test. We may have A: The genetic counselor will answer your Mayo Clinic Biobank to your primary care physician about If we can understand used up all of your sample in a questions about the study and confirm your result and facilitate referrals to previous research study or we were that you want to learn your result. They the underlying will advance our physicians who specialize in managing not able to extract viable DNA from will then provide you with the gene the risks identified through genetic understanding your sample. and the variant you tested positive for. genetics we can They will tell you the specific risks and testing. They will also provide you with of disease. 3 It could mean you live outside diseases associated with the genetic resources to help you communicate develop better ways of the United States. We are only variant and what can be done about it. your results to your family members. returning results to United States to prevent, treat and residents at this time. Q: If I find out I have an increased risk If you are not able or elect not to proceed with clinical confirmation cure disease. 4 It could mean your sample may not for a certain disease, should I call my doctor and tell them? during the appointment, the genetic have been included in one of the counselor will provide you with a letter A: It will be important for your doctors first batches of samples tested for and instructions for getting this done to know about and understand how Project Generation, therefore your later through a local provider. results may be arriving at some these results impact your health. future point. Stay tuned for future However, the genetic counselor will newsletters announcing completion talk to you about first confirming the of the Project Generation return of result using a fresh blood sample from results process through 2022. you. This is a standard procedure and is strongly recommended following the Q: I know I signed a consent when I identification of a medically significant provided my sample to the Biobank research finding. The genetic counselor but what if I don’t want to know can help you with this step. Only my result? clinically confirmed results should be A: That’s ok! You can contact our staff used by physicians to make decisions by emailing us at [email protected] about your healthcare. or calling us toll-free at 866-613-2386 and letting us know you do not want Clinical confirmation typically takes us to contact you if we find something. 1-2 weeks. Once the result is confirmed, 4 5 EVERY SPECIMEN HAS A STORY everything is always changing. FEATURED CAB MEMBER The CAB Network welcomed a new Something new comes up all the coordinator, Sara Watson. Sara joined time. It is exciting to hear about new the Biomedical Ethics Research Program medications and treatments for at Mayo Clinic in October 2019 as a certain diseases in the works by using research coordinator and is excited to the Biobank samples. support Dr. Karen Meagher and the Q: What do you enjoy most at CAB Mayo Clinic Biobank. meetings? The CAB team is thrilled to bring you A: The speakers and Research PI’s a new interview series, titled Every [Principal Investigators] that come to Specimen Has a Story, wherein we the meetings and explain their studies Randy D. Moger share the value of public engagement in and what they are looking for and then Community Advisory Board Member Over the years, the CAB network has expanded biobanking and biospecimen research. we give them our feedback. We have Rochester, Minnesota and now includes three distinct boards made up of people from the surrounding local communities. We will learn that each person who great discussions. donated a biospecimen has an interest in the research being done with the Mayo Clinic Biobank. The goal of “Every BIOBANK CAB NETWORK Community Advisory Board Our first installation in the new series Specimen Has a Story” is UPDATE and community advice for new projects, is a question and answer interview with to elevate and highlight The Community Advisory Board (CAB) including biobank research on electronic Rochester CAB member, Randy Moger: network includes three distinct boards consent and polygenic diseases. Q: How long have you been a CAB the importance of from the local communities of Rochester, Summary of recent CAB network member? Minnesota (Est. 2009) Minnesota; Jacksonville, Florida; and meeting topics: and experiences of A: 12 years (I was on the original panel/ • 13 members Phoenix, Arizona to provide ongoing • Explored virtual options of guidance to the Mayo Clinic Biobank focus group about establishing a community members. Florida (Est. 2014) engaging members in multi-site board–been on the board since day 1!) based on views of individuals from their socials and joint meetings • 11 members region and the Biobank participant Q: Share your history and experience Arizona (Est. 2014) populations. The Sangre por Salud (SPS) • Provided feedback on Chatbot Q: What are some positive reflections with the Community Advisory Board. Biobank from Phoenix area Latinx donors technology, anticipating Project on the importance of community • 11 members How did you learn about the CAB? is made possible through collaboration Generation advisory boards based on your What interested you about the CABs with the Mountain Park Health Center experience? Why is research public • Gave public views and community goals and mission? Why did you want and Arizona State University. engagement important to you? input on Biobank research of to join? addiction genetics A: Surveys have been rewritten, letters Since the last issue of BioNews, each A: I have been on the Board 12 years. have been rewritten, and studies site held four in-person CAB Meetings SEEKING MEMBERS Got a phone call out of the blue, have been reviewed because of reviewing a broad range of topics asking if I was interested in being on a the CAB feedback. The CAB is the Community advisory board members are and seeking community advice and community discussion on Mayo Clinic public’s voice. We are not afraid to tasked to represent their community’s recommendations. Topics included forming a Biobank. After hours on the ask questions, mostly “Why?” and/or values and diverse peers in regular privacy protections provided by the panel, hearing reasons for and against “What if?” meetings where Biobank research Sara E. Watson biobank’s “certificate of confidentiality.” collecting specimens and also hearing projects are presented for input and Q: What would you like Biobank Mayo Clinic Biobank Coordinator The community members’ role play from the Marshfield Biobank and that guidance. We are seeking additional participants to know about the CAB? Rochester, Minnesota activity on this topic was helped out at they have a Community Board, thought members with diverse backgrounds Jacksonville, Florida the Jacksonville site by a visiting retired it would be good idea for Mayo Clinic A: I feel a lot of pride being on the to join the CABs in Rochester, MN and SPS Collection, Phoenix, Arizona FBI agent! Due to the pandemic, the to also start one. Asked for volunteers board. I feel like my concerns are Network explored virtual community Jacksonville, FL. If you are interested, and I agreed to be one. I have enjoyed taken seriously and will be addressed. engagement in 2020—hosting two virtual email [email protected] it greatly! Everyone on the CAB has a chance to socials, and combining Rochester and c/o Sara Watson. Please include the give their feedback and everyone is Jacksonville CABs site meetings for lively experiences and community values Q: What is it like being a CAB member? treated as an equal. It is great to zoom meetings. Recent CAB meetings that you could bring to the community A: It is exciting to be a CAB member! hear other ideas that I never thought included discussion of past project results advisory board. With new technology and research, of before. 6 7 Mayo Clinic NON-PROFIT ORG. U.S. POSTAGE 200 First Street SW PAID Rochester, MN 55905 MAYO CLINIC

About Mayo Clinic Biobank Mayo Clinic and the Center for patients and other volunteers regardless CONTACT US Individualized Medicine have made a of health history. Once a participant significant commitment to building a world- becomes a part of the Biobank, he or she class, scalable biorepository infrastructure, becomes a part of ongoing health Phone which includes two specimen processing research. (507) 293-0203 core laboratories and several large (866) 613-2386 (toll free) centralized biospecimen collections. “The glory of medicine Email One of these biospecimen collections [email protected] is the Mayo Clinic Biobank, a collection is that it is constantly of samples, including blood and blood moving forward, Website derivatives, and health information mayoresearch.mayo.edu/biobank donated by Mayo Clinic patients. Unlike that there is always many in existence at Mayo Clinic and elsewhere, the Mayo Clinic more to learn.” Biobank is not focused on any particular disease. Rather, the Biobank collects – William J. Mayo, M.D. samples and health information from

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