Grants per year
Personal profile
Research Interests
I am interested in ethical issues associated with conducting large-scale genetic research including consenting, data sharing, privacy, return of results, recontact and education of research participants.
Expertise related to UN Sustainable Development Goals
In 2015, UN member states agreed to 17 global Sustainable Development Goals (SDGs) to end poverty, protect the planet and ensure prosperity for all. This person’s work contributes towards the following SDG(s):
Education/Academic qualification
MS, Genetics, Sarah Lawrence College
… → 1987
Research interests keywords
- Bioethics
- Biomedical Communications
- Ethics of Research with Human Subjects
- Genetic Testing/Counseling
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Collaborations and top research areas from the last five years
Recent external collaboration on country/territory level. Dive into details by clicking on the dots or
Grants
- 19 Finished
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Northwestern Genomic Risk Assessment and Management Program
Chisholm, R. L. (PD/PI), Chisholm, R. L. (PD/PI), McNally, E. M. (PD/PI), McNally, E. M. (PD/PI), Rasmussen-Torvik, L. J. (PD/PI), Rasmussen-Torvik, L. J. (PD/PI), Gordon, A. S. (Co-Investigator), Gordon, A. S. (Co-Investigator), Kho, A. N. (Co-Investigator), Kho, A. N. (Co-Investigator), Luo, Y. (Co-Investigator), Luo, Y. (Co-Investigator), Perera, M. (Co-Investigator), Perera, M. (Co-Investigator), Roy-Puckelwartz, M. J. (Co-Investigator), Roy-Puckelwartz, M. J. (Co-Investigator), Scherr, C. E. L. (Co-Investigator), Scherr, C. E. L. (Co-Investigator), Scherr, C. E. L. (Co-Investigator), Scholtens, D. M. (Co-Investigator), Scholtens, D. M. (Co-Investigator), Smith, M. E. (Co-Investigator), Smith, M. E. (Co-Investigator), Starren, J. (Co-Investigator), Starren, J. (Co-Investigator), Walunas, T. L. (Co-Investigator), Walunas, T. L. (Co-Investigator), Wehbe, F. (Co-Investigator), Wehbe, F. (Co-Investigator), Aufox, S. A. (Other), Aufox, S. A. (Other), Hoell, C. (Other) & Hoell, C. (Other)
National Human Genome Research Institute
7/1/20 → 4/30/25
Project: Research project
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Genetic Analysis of Scleroderma Patients
Roy-Puckelwartz, M. J. (PD/PI), Smith, M. E. (PD/PI) & Varga, J. (Co-Investigator)
5/22/19 → 5/21/23
Project: Research project
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Infrastructure: Illinois Precision Medicine Consortium (IPMC)
Greenland, P. (PD/PI), Greenland, P. (PD/PI), Ackermann, R. T. (Co-Investigator), Ackermann, R. T. (Co-Investigator), Chisholm, R. L. (Co-Investigator), Chisholm, R. L. (Co-Investigator), Cristofanilli, M. (Co-Investigator), Ho, J. (Co-Investigator), Ho, J. (Co-Investigator), Kho, A. N. (Co-Investigator), Kho, A. N. (Co-Investigator), Simon, M. A. (Co-Investigator), Simon, M. A. (Co-Investigator), Smith, M. E. (Co-Investigator), Smith, M. E. (Co-Investigator), Wehbe, F. (Co-Investigator) & Wehbe, F. (Co-Investigator)
Office of the Director, National Institutes of Health
6/1/18 → 8/31/23
Project: Research project
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VGER, the Vanderbilt Genome-Electronic Records Project
Smith, M. E. (PD/PI) & Wehbe, F. (Co-Investigator)
Vanderbilt University, National Human Genome Research Institute
6/1/18 → 3/31/20
Project: Research project
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Launching a blood and spinal fluid based biomarker program for SCAs
Opal, P. (PD/PI) & Smith, M. E. (Co-PD/PI)
1/1/18 → 12/31/20
Project: Research project
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Exploring genetic counselors' practice of discussing clinical trials with patients
Bloom, T., Bonini, K. E., Gutierrez-Kapheim, M., Kinsley, L. M., Smith, M. E. & Duquette, D., Apr 2025, In: Journal of Genetic Counseling. 34, 2, e1934.Research output: Contribution to journal › Article › peer-review
Open Access -
A deep catalogue of protein-coding variation in 983,578 individuals
Senior Partnerships and Business Operations, Business Operations and Administrative Coordinators, RGC-ME Cohort Partners, Accelerated Cures, African Descent and Glaucoma Evaluation Study (ADAGES) III, Age-related macular degeneration in the Amish, Albert Einstein College of Medicine, Amish Connectome Project, Amish Research Clinic, The Australia and New Zealand MS Genetics Consortium, Center for Non-Communicable Diseases (CNCD), Cincinnati Children’s Hospital, Columbia University, Dallas Heart Study, Diabetic Retinopathy Clinical Research (DRCR) Retina Network, Duke University, Flinders University of South Australia, Indiana Biobank, Indiana University School of Medicine & Kaiser Permanente & 26 others, , Jul 18 2024, In: Nature. 631, 8021, p. 583-592 10 p.Research output: Contribution to journal › Article › peer-review
23 Scopus citations -
From Calculation to Communication: Using Risk Score Calculators to Inform Clinical Decision Making and Facilitate Patient Engagement
Fakhari, H., Scherr, C. L., Moe, S., Hoell, C., Smith, M. E., Rasmussen-Torvik, L. J., Chisholm, R. L. & McNally, E. M., Nov 2024, In: Medical Decision Making. 44, 8, p. 900-913 14 p.Research output: Contribution to journal › Article › peer-review
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Genetic sex validation for sample tracking in next-generation sequencing clinical testing
the eMERGE III consortium, Dec 2024, In: BMC Research Notes. 17, 1, 62.Research output: Contribution to journal › Article › peer-review
1 Scopus citations -
Defining critical educational components of informed consent for genetic testing: views of US-based genetic counselors and medical geneticists
Hallquist, M. L. G., Borensztein, M. J., Coughlin, C. R., Buchanan, A. H., Andrew Faucett, W., Peay, H. L., Smith, M. E., Tricou, E. P., Uhlmann, W. R., Wain, K. E. & Ormond, K. E., Oct 2023, In: European Journal of Human Genetics. 31, 10, p. 1165-1174 10 p.Research output: Contribution to journal › Article › peer-review
Open Access5 Scopus citations
Datasets
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Additional file 2 of Application of a framework to guide genetic testing communication across clinical indications
Hallquist, M. L. G. (Creator), Tricou, E. P. (Creator), Ormond, K. E. (Creator), Savatt, J. M. (Creator), Coughlin, C. R. (Creator), Faucett, W. A. (Contributor), Hercher, L. (Creator), Levy, H. P. (Creator), O’Daniel, J. M. (Creator), Peay, H. L. (Creator), Stosic, M. (Creator), Smith, M. (Creator), Uhlmann, W. R. (Creator), Wand, H. (Creator), Wain, K. E. (Creator) & Buchanan, A. H. (Creator), figshare, 2021
DOI: 10.6084/m9.figshare.14516336, https://springernature.figshare.com/articles/dataset/Additional_file_2_of_Application_of_a_framework_to_guide_genetic_testing_communication_across_clinical_indications/14516336
Dataset
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Additional file 3 of Application of a framework to guide genetic testing communication across clinical indications
Hallquist, M. L. G. (Creator), Tricou, E. P. (Creator), Ormond, K. E. (Creator), Savatt, J. M. (Creator), Coughlin, C. R. (Creator), Faucett, W. A. (Contributor), Hercher, L. (Creator), Levy, H. P. (Creator), O’Daniel, J. M. (Creator), Peay, H. L. (Creator), Stosic, M. (Creator), Smith, M. (Creator), Uhlmann, W. R. (Creator), Wand, H. (Creator), Wain, K. E. (Creator) & Buchanan, A. H. (Creator), figshare, 2021
DOI: 10.6084/m9.figshare.14516339, https://springernature.figshare.com/articles/dataset/Additional_file_3_of_Application_of_a_framework_to_guide_genetic_testing_communication_across_clinical_indications/14516339
Dataset
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Application of a framework to guide genetic testing communication across clinical indications
Hallquist, M. L. G. (Creator), Tricou, E. P. (Creator), Ormond, K. E. (Creator), Savatt, J. M. (Creator), Coughlin, C. R. (Creator), Faucett, W. A. (Contributor), Hercher, L. (Creator), Levy, H. P. (Creator), O’Daniel, J. M. (Creator), Peay, H. L. (Creator), Stosic, M. (Creator), Smith, M. (Creator), Uhlmann, W. R. (Creator), Wand, H. (Creator), Wain, K. E. (Creator) & Buchanan, A. H. (Creator), figshare, 2021
DOI: 10.6084/m9.figshare.c.5408249, https://springernature.figshare.com/collections/Application_of_a_framework_to_guide_genetic_testing_communication_across_clinical_indications/5408249
Dataset