• 1101 Citations
1997 …2023
If you made any changes in Pure, your changes will be visible here soon.

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

Keywords

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

Fingerprint Fingerprint is based on mining the text of the experts' scientific documents to create an index of weighted terms, which defines the key subjects of each individual researcher.

  • 11 Similar Profiles
Electronic Health Records Medicine & Life Sciences
Genomics Medicine & Life Sciences
Information Dissemination Medicine & Life Sciences
Genome-Wide Association Study Medicine & Life Sciences
Research Medicine & Life Sciences
Pharmacogenetics Medicine & Life Sciences
Genetic Research Medicine & Life Sciences
Research Ethics Committees Medicine & Life Sciences

Network Recent external collaboration on country level. Dive into details by clicking on the dots.

Grants 2007 2023

Medical History Taking
Genome
Point-of-Care Systems
Workflow
Medical Records
Spinocerebellar Ataxias
Biomarkers
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

Disclosure
Genetic Testing
Communication
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
Genomics
Medicine
Informed Consent
Electronic Health Records
Genomics
Uncertainty
Health Personnel
Interviews

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
parents
Parents
Privacy
scenario
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

Pharmacogenetics
Research
Genotype
Alleles