Amy A. Lemke , PhD, MS

• MS in Genetic Counseling: University of California, Berkeley
• PhD in Public Health: University of Illinois, Chicago

• American Board of Medical Genetics, Genetic Counseling #870222

• Genomic data management of research participants and patients
• Return of genomic research results
• Population genomic screening and testing
• Pharmacogenomic testing
• Stakeholder engagement
• Assessing the impact of genomic health initiatives on patients, healthcare providers, healthcare organizations, and the public

Dr. Lemke received her Master’s degree from the University of California, Berkeley, in genetic counseling, and a PhD in Public Health, Community Health, from the University of Illinois at Chicago. She has provided patient care to individuals with genetic conditions and directed several Illinois Department of Public Health grant funded programs to offer genetic services to underserved populations in the Chicago area. Following her clinical career, Dr. Lemke utilized her public health training to pursue research and faculty appointments at institutions including Northwestern University, the University of Illinois at Chicago, and the University of Chicago. She has served on national committees for the American Society of Human Genetics, the American College of Medical Genetics/Genomics, and the National Society of Genetic Counselors. Dr. Lemke has also been the lead for a Center of Excellence in Ethical Research (CEER) multi-center grant Working Group to assess the process of stakeholder engagement in genomics policy development. 

Dr. Lemke has been an investigator on several NIH-funded grants that assessed stakeholder perspectives on data sharing, privacy protection, and other ethical, legal, and social (ELS) issues in the management of genomic health data. She helped lead two NIH-funded community engagement projects. One phase involved a focus group study to elicit public and biorepository participant views toward genetic research participation and the other utilized national surveys of members of the American Society of Human Genetics, and of Public Responsibility in Medicine and Research, to learn more about researchers’ and institutional review board members’ opinions toward review of genetic research. In these projects, she collaborated with consortia, such as electronic Medical Records and Genomics (eMERGE), the Genetic Research Review Issues Project, and multiple CEERs. To explore some of the same ELS issues in a traditionally underrepresented group in research, Dr. Lemke worked as an investigator on a NIH/NCRR-funded deliberative engagement study to assess views of African-American clinic patients toward return of genomic research results. She was also the lead investigator for one of the first studies (American College of Medical Genetics survey) to assess clinical genetics professionals’ views toward genome sequencing and the return of incidental findings. Dr. Lemke’s current health research focuses on precision medicine initiatives, management of genomic data, return of genomic research and clinical results, pharmacogenomic testing, and the impact of emerging genomic technologies on key stakeholders such as patients, research participants, providers, and healthcare organizations.

Awards:

• (1995) Regional Leadership Award, National Society of Genetic Counselors
• (1997) Chicago Bar Association Public Health Award
• (1996-1998) University of Illinois, Chicago, School of Public Health Merit Scholarship

Appointed Leadership and Committee Positions:

• (1984-2001) Genetics Task Force of Illinois, Inc.; 1990 - 1991 President
• (1985-2000) Great Lakes Regional Genetics Group Education Committee
• (1993-2001) Illinois Genetic and Metabolic Advisory Board
• (1994-1998) RUSH Doctor of Nursing Genetic Health Program Advisory Board                                             
• (2006-2018) UW Madison Genetic Counseling Training Program Advisory Board
• (2006-2007) Evaluation of Genomic Applications in Practice and Prevention (EGAPP)  Stakeholder Advisory Group
• (2007-2011) Northwestern University Clinical and Translational Sciences (NUCATS) Institute, Northwestern University Community Engagement Council                     
• (2007-2011) Electronic Medical Records and Genomics (eMERGE) Consent and Community Consultation Work Group. Member of two Work Areas: IRB, and Role of Community                           
• (2008-2012) Genetics Research Review Issues Project                           
• (2010-present) CTSA Community Engagement Key Function Committee and Biobank Workgroup     
• (2012-2017; 2019-present) Clinical Sequencing Exploratory Research Consortium (CSER)
  • Return of results, Metrics, and Measures, Stakeholder Engagement Workgroups
• (2012-2013) Mayo Clinic ELSI Working Group for Whole Genome and Exome Sequencing    
• (2013-2015; 2019-present) Centers for Excellence in Ethical Research (CEER)
  • Stakeholder Engagement Work Group Leader
• (2016-present) NorthShore University HealthSystem Return of Results Steering Committee and Pharmacogenomics Steering Committee
• (2019-present) NorthShore University HealthSystem Outcomes Research Network Steering Committee and Personalized Medicine Outcomes Research Steering Committee
• (2017-present) NorthShore University HealthSystem Institutional Review Board 

Professional Society Memberships:

• (1982-present) American Society of Human Genetics
• (1982-present) National Society of Genetic Counselors
• (1993-present) American College of Medical Genetics
• (2009-2012) Public Responsibility in Medicine and Research
• (2011-2013) American Society of Bioethics and Humanities

Peer Review Service:

• Journal of Women's Health
• Journal of Genetic Counseling
• Public Health Genomics
• Genetics in Medicine
• Journal of Empirical Research on Human Research Ethics
• IRB: Ethics and Human Research
• Genetic Testing and Molecular Biomarkers
• Clinical Genetics
• Digital Health
• Personalized Medicine

Publications in Peer-Reviewed Journals:

• Lester LA, Kraut J, Lloyd-Still J, Karrison T, Mott C, Billstrand C, Lemke A, Ober C (1994). F508 Genotype does not Predict Disease Severity in an Ethnically Diverse Cystic Fibrosis Population. Peds 93 (1): 114-118.
• Mahowald MB, Levinson D, Cassel C, Lemke A, Ober C, Bowman J, LeBeau M, Ravin A, Times M (1996). The New Genetics and Women. Milbank Quarterly 74 (2): 239-283.
• Lemke A, Dayal S, Geibel L (1998). Preconception Genetic Counseling: Three Years of Experience at a Community-Based Health Center. J Gen Couns 7 (1): 71-85.
• Cella D, Hughes C, Peterman A, Chang C-H., Peshkin BN, Schwartz MD, Wenzel L, Lemke A, Marcus A, Lerman C (2002).  A Brief Assessment of Concerns Associated with Genetic Testing for Cancer:  The Multidimensional Impact of Cancer Risk Assessment (MICRA) Questionnaire.  Health Psychology 21 (6): 564-572.
• Bellcross C, Lemke AA, Pape LS, Tess AL, Meisner LT (2009).  Evaluation of a Breast/ovarian Cancer Genetics Referral Screening Tool in a Mammography Population. Genetics in Medicine 11(11): 783-9.
• Lemke AA, Wolf WA, Heibert-Berne J, Smith ME (2010). Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing. Public Health Genomics (13)6: 368-77.  PMC 2851726           
• Lemke AA, Trinidad SB, Edwards KL,Starks H, Wiesner GL, and the GRRIP Consortium (2010).  Attitudes toward Genetic Research Review:  A National Survey of Professionals involved in Human Subjects Protections. JERHRE (5) 1:83-91. PMC 2902178.
• Wright Clayton E, Smith M, Fullerton SM, Burke W, McCarty CA, Koenig B, McGuire AL, Beskow LM, Dressler L, Lemke AA, Ramos EM, Rodriguez LL, for the Consent and Community Consultation Working Group of the eMERGE Consortium (2010). Confronting Real Time Ethical, Legal and Social Issues in the electronic Medical Records and Genomics Consortium (eMERGE). Genet Med  Oct;12(10):616-20. PMC 3090678.        
• Lemke AA, Wu JT, Brown Trinidad S, Lam A, Pulley J, Waudby C (2010). Community Engagement in Biobanking: Experiences of the eMERGE Network. Genomics, Society and Policy  6(3):35-52.  PMC 3434453.
• Edwards KL, Lemke AA, Trinidad SB, Lewis SM, Starks H, Quinn Griffin M, Wiesner GL and the GRRIP Consortium (2011). Attitudes toward Genetic Research Review: Results from a Survey of Human Genetics Researchers. Public Health Genomics 14(6):337-45. PMC 3221257.
• Lemke AA, Smith ME, Wolf WA, Trinidad SB, and the GRRIP Consortium (2011).  Broad Data Sharing in Genetic Research: Current Understanding and Practices of Institutional Review Boards in Reviewing Genetic Research Protocols. IRB: Ethics and Human Research 33(3):1-5. PMC 3394177.
• Edwards KL*, Lemke AA^**, Trinidad SB, Lewis SM, Starks H, Snappin K, Griffin M, Wiesner GL, Burke W (2012).  Genetic Researchers’ and IRB Professionals’ Attitudes toward Genetic Research Review: A Comparative Analysis. (*  ** Co-first authors). Genet Med: 14(2):236-242. PMC 3448270.
• Lemke AA, Halverson C, Ross LF (2012). Biobank Participation and Returning Research Results:  Perspectives from a Deliberative Engagement in South Side Chicago. Am Jr Med Genet Part A. 158A (5): 1029-1037. PMC 3331902.
• Lakes K, Vaughan E, Lemke A, Jones M, Baker D, Swanson JM, Burke W (2013). Maternal Perspectives of the Return of Genetic Results: Context Matters. Genet Med 161(1):38-47. PMC 3535554.
• Lemke AA, Bick D, Dimmock D, Simpson P, Veith R. Perspectives of Clinical Genetics Professionals Toward Genome Sequencing and Incidental Findings: A Survey Study (2013). Clin Genet 84(3): 230-6. PMC 3888159.
• Lemke AA, Harris-Wai JN (2015). Stakeholder Engagement in Policy Development: Challenges and Opportunities for Human Genomics. Genet Med 17: 949-957. PMC 4567945.
• Zierhut HA, Campbell CA, Mitchell AG, Lemke AA, Mills R, Bishop JR (2017). Collaborative Counseling Considerations for Pharmacogenomic Tests. Pharmacotherapy 37(9): 990-999.
• Lemke AA, Hutten Selkirk CG, Glaser NS, Sereika AW, Wake DT, Hulick PJ, Dunnenberger HM. Primary Care Physician Experiences with Integrated Pharmacogenomic Testing in a Community Health System. Personalized Medicine 14(5): 389-400.
• Lemke AA, Hulick P, Sereika A, Yu K, Wang C, Glaser N, Wake D, Dunnenberger M (2018). Patient Perspectives Following Results Disclosure in an Integrated Health System. Pharmacogenomics 19(4): 321-331.
• Mills R, Eichmeyer J, Williams L, Muskett J, Schmidlen T, Maloney K, Lemke AA (2018). Patient Care Situations Benefitting from Pharmacogenomic Testing. Current GeneticMedicine Reports 6:43-51.
• Lemke AA, Thompson J, Hulick PJ, Sereika A, Johnson C, Oshman L, Dunnenberger HM (2020). Primary Care Physician Experiences Utilizing a Family Health History Tool with Electronic Health Record-Integrated Clinical Decision Support: An Implementation Process Evaluation. J Community Genet 11(3):339-350.
• Lemke AA, Dunnenberger HM, Thompson J, Johnson C, Kuchta K, Ilbawi N, Oshman L, Hulick PJ (2020). Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed Methods Assessment. J Pers Med 10(4):165-172.
• Lemke AA, Amendola L, Thompson J, Dunnenberger HM, Wang C, Kuchta K, Dilzell-Yu K, Johnson C, Hulick P (2021). Patient-reported outcomes and experiences with population genetic testing offered through a primary care network. Genet Test Mol Biomarkers 25(2):152-160.

Research Grants/Projects:

Active:

• (2019-2021) Principal Investigator, NorthShore University HealthSystem, Patient Experiences with Pre-emptive Genome Sequencing in an Integrated Health System
• (2019-2021) An Assessment of Primary Care Physician Experiences with Pre-emptive Genome Sequencing in an Integrated Health System
• (2021-2023) Principal Investigator, Swedish Hospital Foundation Grant, Engaging Diverse Communities in Population Genetic Testing

 Prior:

• (1992-1995) Co-Investigator, National Center for Human Genome Research, NIH Ethical, Legal, and Social Implications Program, The Human Genome Project and Women
• (1994-1997) Principal Investigator, Illinois Department of Public Health, Division of Family Health Preconception Genetic Counseling Services for Low-Income Family Planning Clinics, Woodlawn Maternal Child Health Center
• (1997-2001) Principal Investigator, Illinois Department of Public Health, Division of Health and Wellness Preconception Genetic Counseling Services for Low-Income Family Planning and Child Health Clinics, Evanston Health Department
• (2006-2007) Co-Principal Investigator, Illinois Department of Public Health Genetics Program Development of the Illinois State Genetics Plan
• (2007-2011) Co-Investigator, National Human Genome Research Institute, NIH Genome-wide Studies from the NUgene Biorepository
• (2007-2008) Principal Investigator, Illinois Department of Public Health Genetics Program Professional Genetics Education Implementation Grant
• (2008-2009) Principal Investigator, Illinois Department of Public Health Genetics Program Professional Genetics Education Implementation Grant
• (2010-2011) Site Principal Investigator, National Council for Research Resources, NIH, DHHS Returning Research Results:  A Deliberative Democracy Investigation
• (2010-2011) Site Principal Investigator, National Human Genome Research Institute, NIH Ethical & Social Issues in the Study of Genetics of Complex Traits
• (2011-2014) Site Principal Investigator/Senior Scientist Consultant, National Human Genome Research Institute, NIH Innovative Approaches to Returning Results in Exome and Genome Sequencing
• (2010-2015) Site Principal Investigator/Senior Scientist Consultant, National Human Genome Research Institute, NIH Center for Genomics and Healthcare Equality
• (2016-2018) Principal Investigator, NorthShore University HealthSystem Primary Care Provider Experiences with Pharmacogenomic Testing: A Qualitative Assessment
• (2017-2019) Principal Investigator, NorthShore University HealthSystem, An Assessment of Patient Views Post-Disclosure of Pharmacogenomic Results
• (2018-2020) Principal Investigator, NorthShore University HealthSystem, The Genetic and Wellness Tool in Primary Care: An Evaluation of Provider Utilization

Select National Peer Reviewed Presentations/Workshops: (last 10 years)

• Assessing Public and Biobank Participant Attitudes toward Data Sharing for Genome-Wide Association Studies:  A Community Consultation Approach. Presented to NHGRI Expert Scientific Panel. Bethesda, MD. November, 2008.
• Community Engagement in Population Genomic Research: Experiences of Six Large EMR-Linked Biobanks in the United States. Presented to NHGRI Expert Scientific Panel. Seattle, WA. August, 2009.
• Attitudes toward Genetic Research Review: A National Survey of Institutional Review Board Professionals.  Presented at the American Society of Human Genetics Conference. Honolulu, HI. November, 2009.
• Attitudes toward Genetic Research Review: Results from a National Survey of Professionals involved in Human Subjects Protection.  Presented at the GRRIP Consensus Meeting at the University of Washington.  Seattle, WA. February, 2010.
• Views of Institutional Review Board Professionals. Presented at the American Society for Bioethics and Humanities 2010 Annual Meeting, San Diego.
• Identifiability in Genomic Research: Views of Genetic Researchers and IRB Professionals. Presented at the American Society of Human Genetics 2010 Social Issues Session, Washington, DC.
• Stakeholder Views toward Review of Genetic Research: A Comparative Study. Presented at the Genomics and Public Health Annual 2010 Meeting, Bethesda.
• Community Engagement in Biobanking: Experiences from the eMERGE Network. Presented at the Genomics and Public Health Annual 2010 Meeting, Bethesda.
• Building Better Biobanks: An Interactive Stakeholder Workshop.  Moderated session at the Genetic Alliance Conference, June, 2011, Bethesda.
• Challenges in Research Ethics and Policy: Perspectives on Data Sharing: Researcher’s Perspectives. Presented at the eMERGE Stakeholder Conference. July, 2011, Bethesda.
• Genomic Medicine: ELSI goes Mainstream (Social Issues Session). Ethical and Social Issues in Genome Sequencing: The Road Ahead. Presented at the American Society of Human Genetics Conference.  November, 2012, San Francisco.
• Stakeholder Engagement in Genomics Policy Development: What is it? Why do it and how? Social Issues Session, Moderator. Presented at the American Society of Human Genetics Conference. October, 2014. San Diego.
• Stakeholder Engagement in Genomics Research: Ethical, Legal and Social Issues. Presented at the NIH/NHGRI CEER Consortium Annual Meeting. March, 2015 Bethesda, MD.
• Attitudes toward Genomic Research Participation and Data Sharing. Presented at the AMIA annual education meeting. November, 2016. Chicago, IL.
• Potential Benefits and Risks of Pharmacogenomics Testing: Patient Perspectives following Results Disclosure. Presented at the NIH Genomics ELSI Congress, June, 2017. Farmington, CT.
• Patient and Provider Perspectives on Pharmacogenomic Testing in a Community Health System. Mayo Individualizing Medicine Annual Conference. Rochester, MN. October, 2017.
• Genomic Testing: Strategies and Patient Perspectives. Moderator at American Society of Human Genetics Annual Conference, San Diego, CA. October, 2018.
• Pre-emptive Hereditary Cancer Genetic Testing in Primary Care: Leveraging Early Program Data for Process Improvement. American Society of Human Genetics Annual Conference, Houston, TX. October, 2019.
• Delivering Genomics Digitally: Are We Ready? Social Issues Session, Moderator. Presented at the American Society of Human Genetics Virtual Conference. October, 2020.
• Patient-reported Outcomes and Experiences with Population Genetic Testing offered through a Primary Care Network. Featured plenary presentation at the American Society of Human Genetics Virtual Conference. October, 2020.