• 1101 Citations
1997 …2023
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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.

Education/Academic qualification

MS, Sarah Lawrence College

… → 1987


  • Bioethics
  • Biomedical Communications
  • Ethics of Research with Human Subjects
  • Genetic Testing/Counseling

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  • 11 Similar Profiles
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Genomics Medicine & Life Sciences
Information Dissemination Medicine & Life Sciences
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Pharmacogenetics Medicine & Life Sciences
Genetic Research Medicine & Life Sciences
Research Ethics Committees Medicine & Life Sciences

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Grants 2007 2023

Medical History Taking
Point-of-Care Systems
Medical Records
Spinocerebellar Ataxias
Natural History
Clinical Trials
Consent Forms

Research Output 1997 2018

Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background

Ormond, K. E., Hallquist, M. L. G., Buchanan, A. H., Dondanville, D., Cho, M. K., Smith, M. E., Roche, M., Brothers, K. B., Coughlin, C. R., Hercher, L., Hudgins, L., Jamal, S., Levy, H. P., Raskin, M., Stosic, M., Uhlmann, W., Wain, K. E., Currey, E. & Faucett, W. A., Jul 6 2018, (Accepted/In press) In : Genetics in Medicine. p. 1-9 9 p.

Research output: Contribution to journalArticle

Genetic Testing
Genetic Background
Focus Groups
6 Citations

Ethical considerations related to return of results from genomic medicine projects: The eMERGE network (phase III) experience

Fossey, R., Kochan, D., Winkler, E., Pacyna, J. E., Olson, J., Thibodeau, S., Connolly, J. J., Harr, M., Behr, M. A., Prows, C. A., Cobb, B., Myers, M. F., Leslie, N. D., Namjou-Khales, B., Rasouly, H. M., Wynn, J., Fedotov, A., Chung, W. K., Gharavi, A., Williams, J. L. & 13 othersPais, L., Holm, I., Aufox, S. A., Smith, M. E., Scrol, A., Leppig, K., Jarvik, G. P., Wiesner, G. L., Li, R., Stroud, M., Smoller, J. W., Sharp, R. R. & Kullo, I. J., Mar 1 2018, In : Journal of Personalized Medicine. 8, 1, 2.

Research output: Contribution to journalArticle

Electronic Health Records
Research Ethics Committees
Informed Consent
Electronic Health Records
Health Personnel

Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey

Antommaria, A. H. M., Brothers, K. B., Myers, J. A., Feygin, Y. B., Aufox, S. A., Brilliant, M. H., Conway, P., Fullerton, S. M., Garrison, N. A., Horowitz, C. R., Jarvik, G. P., Li, R., Ludman, E. J., McCarty, C. A., McCormick, J. B., Mercaldo, N. D., Myers, M. F., Sanderson, S. C., Shrubsole, M. J., Schildcrout, J. S. & 4 othersWilliams, J. L., Smith, M. E., Clayton, E. W. & Holm, I. A., Jul 3 2018, In : AJOB Empirical Bioethics. 9, 3, p. 128-142 15 p.

Research output: Contribution to journalArticle

Information Dissemination
4 Citations

Concordance between Research Sequencing and Clinical Pharmacogenetic Genotyping in the eMERGE-PGx Study

Rasmussen-Torvik, L. J., Almoguera, B., Doheny, K. F., Freimuth, R. R., Gordon, A. S., Hakonarson, H., Hawkins, J. B., Husami, A., Ivacic, L. C., Kullo, I. J., Linderman, M. D., Manolio, T. A., Obeng, A. O., Pellegrino, R., Prows, C. A., Ritchie, M. D., Smith, M. E., Stallings, S. C., Wolf, W. A., Zhang, K. & 1 othersScott, S. A., Jul 1 2017, In : Journal of Molecular Diagnostics. 19, 4, p. 561-566 6 p.

Research output: Contribution to journalArticle