المؤلفون: Julia Handra, Colleen Guimond, Isabel Jordan, Brenda Lenahan, Kelsey Ohs, Rhea Beauchesne, Shelin Adam, Jan M. Friedman, Patricia Birch

المصدر: PEC Innovation, Vol 1, Iss , Pp 100039- (2022)

مصطلحات موضوعية: Genome sequencing, genomic results, genetic counselling, patient-oriented research, patient co-design, Public aspects of medicine, RA1-1270

وصف الملف: electronic resource

Relation: http://www.sciencedirect.com/science/article/pii/S2772628222000243; https://doaj.org/toc/2772-6282

URL الوصول: https://doaj.org/article/8beb07648a5c4998979efb2ba5f32816

المؤلفون: Kinuko Ohneda, 大根田 絹子

المصدر: 産業保健法学会誌 / Journal of Occupational Health Law. 2023, 2(1):121

المؤلفون: Juliann M. Savatt, Jennifer K. Wagner, Steven Joffe, Alanna Kulchak Rahm, Marc S. Williams, Angela R. Bradbury, F. Daniel Davis, Julie Hergenrather, Yirui Hu, Melissa A. Kelly, H. Lester Kirchner, Michelle N. Meyer, Jessica Mozersky, Sean M. O’Dell, Josie Pervola, Andrea Seeley, Amy C. Sturm, Adam H. Buchanan

المصدر: BMC Pediatrics, Vol 20, Iss 1, Pp 1-13 (2020)

مصطلحات موضوعية: Return of genomic results, Genomic medicine, Secondary findings, Pediatrics, BRCA1, BRCA2, RJ1-570

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s12887-020-02070-4; https://doaj.org/toc/1471-2431

URL الوصول: https://doaj.org/article/1cc3526caded4983bbca8ff49eca3c17

المؤلفون: Clayton, Ellen W., Madden, J. A., al., et

المصدر: Vanderbilt Law School Faculty Publications

مصطلحات موضوعية: Attitudes, Ethics, Health care providers, Return of research results, Unsolicited genomic results, Health Law and Policy, Law

Relation: https://scholarship.law.vanderbilt.edu/faculty-publications/1259; http://www.sciencedirect.com/science/article/pii/S1098360022006761

الاتاحة: https://scholarship.law.vanderbilt.edu/faculty-publications/1259
http://www.sciencedirect.com/science/article/pii/S1098360022006761

المؤلفون: Amy A. Blumling, Cynthia A. Prows, Margaret H. Harr, Wendy K. Chung, Ellen Wright Clayton, Ingrid A. Holm, Georgia L. Wiesner, John J. Connolly, John B. Harley, Hakon Hakonarson, Michelle L. McGowan, Erin M. Miller, Melanie F. Myers

المصدر: Journal of Personalized Medicine; Volume 12; Issue 11; Pages: 1910

مصطلحات موضوعية: genomic screening, pediatric genomics, return of genomic results, healthcare outcomes

وصف الملف: application/pdf

Relation: https://dx.doi.org/10.3390/jpm12111910

الاتاحة: https://doi.org/10.3390/jpm12111910

المؤلفون: Akira Uruno, Atsushi Hozawa, Atsushi Masamune, Eiji Hishimuma, Fuji Nagami, Hiroaki Tomita, Hiroshi Kawame, Inaho Danjoh, Jun Suzuki, Junichi Sugawara, Kengo Kinoshita, Kichiya Suzuki, Kinuko Ohneda, Makiko Taira, Masaharu Nakayama, Masahiro Hiratsuka, Masaki Matsuura, Masateru Nakasone, Masayuki Yamamoto, Mika Sakurai-Yageta, Naoko Minegishi, Nariyasu Mano, Nobuo Fuse, Shigeo Kure, Shinichi Kuriyama, Shu Tadaka, Soichi Ogishima, Taku Obara, Tomohiro Nakamura, Tomoko Kobayashi, Yohei Hamanaka, Yohei Honkura, Yoichi Kakuta, Yoichi Suzuki, Yoko Aoki, Yuji Sato, Yukio Katori, Yumi Yamaguchi-Kabata

المصدر: JMA Journal. 2022, 5(2):177

المؤلفون: Noura S. Abul-Husn (10106837), Emily R. Soper (10106840), Giovanna T. Braganza (10106843), Jessica E. Rodriguez (9988900), Natasha Zeid (10106846), Sinead Cullina (8209128), Dean Bobo (8209131), Arden Moscati (8209134), Amanda Merkelson (10106849), Ruth J. F. Loos (6733301), Judy H. Cho (10106852), Gillian M. Belbin (10106855), Sabrina A. Suckiel (9988876), Eimear E. Kenny (6830078)

مصطلحات موضوعية: Science Policy, Infectious Diseases, Biological Sciences not elsewhere classified, HBOC, BioMe protocol modification, Implementing genomic screening, genomic medicine research, New York City, genomic screening programs, African ancestry populations, findings increase knowledge, FH, populations Abstract Background Pop., USA, genomic results, LS, HL participants, AA, pilot genomic screening program, genomic screening, TTR

Relation: https://figshare.com/articles/journal_contribution/Additional_file_1_of_Implementing_genomic_screening_in_diverse_populations/13725404

الاتاحة: https://doi.org/10.6084/m9.figshare.13725404.v1

المؤلفون: Rebecca L. Hsu, Amanda M. Gutierrez, Sophie K. Schellhammer, Jill O. Robinson, Sarah Scollon, Richard L. Street, Alyssa N. Salisbury, Stacey Pereira, Sharon E. Plon, Janet Malek, D. Williams Parsons, Amy L. McGuire

المصدر: Journal of Personalized Medicine; Volume 11; Issue 6; Pages: 570

مصطلحات موضوعية: pediatric genomics, return of genomic results, communication, pediatric oncology, exome sequencing, genetic counseling, genomic sequencing, cancer genomics

وصف الملف: application/pdf

Relation: Omics/Informatics; https://dx.doi.org/10.3390/jpm11060570

الاتاحة: https://doi.org/10.3390/jpm11060570

المؤلفون: Julia Wynn, Katie Lewis, Laura M. Amendola, Barbara A. Bernhardt, Sawona Biswas, Manasi Joshi, Carmit McMullen, Sarah Scollon

المصدر: BMC Medical Genomics, Vol 11, Iss 1, Pp 1-13 (2018)

مصطلحات موضوعية: Genomic sequencing, Exome sequencing, Genomic results, Genetic counseling, Secondary results, Internal medicine, RC31-1245, Genetics, QH426-470

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s12920-018-0360-z; https://doaj.org/toc/1755-8794

URL الوصول: https://doaj.org/article/6145cb087462430a8118a3fd80c52bd1

المؤلفون: Perry, Katherine

مصطلحات موضوعية: Genetics, Adolescent-parent dyads, Discordant, Joint decision, Qualitative analysis, Facilitated discussions, Genomic results

الاتاحة: http://rave.ohiolink.edu/etdc/view?acc_num=ucin1626356893073779

المؤلفون: Thavaneswaran, Subotheni, Ballinger, Mandy, Butow, Phyllis, Meiser, Bettina, Goldstein, David, Lin, Frank, Napier, Christine, Thomas, David, Best, Megan

المصدر: IES Papers and Journal Articles

مصطلحات موضوعية: cross-sectional survey, cancer treatment, comprehensive genomic profiling (CGP), utilising genomic results, Medicine and Health Sciences

Relation: https://researchonline.nd.edu.au/ies_article/18

الاتاحة: https://researchonline.nd.edu.au/ies_article/18

المؤلفون: Julia Wynn, Hila Milo-Rasouly, Alexander Fedotov, George Hripcsak, Chunhua Weng, Ali G. Gharavi, Maddalena Marasa, Suzanne Bakken, Jordan G. Nestor, David Fasel, Soumitra Sengupta, Wendy K. Chung

المصدر: JAMIA Open

مصطلحات موضوعية: AcademicSubjects/SCI01060, 020205 medical informatics, Computer science, health care facilities, manpower, and services, Case Report, Health Informatics, Context (language use), 02 engineering and technology, Tertiary care, 03 medical and health sciences, 0302 clinical medicine, Electronic health record, health services administration, clinical engagement with genomic results, 0202 electrical engineering, electronic engineering, information engineering, medicine, 030212 general & internal medicine, Empirical evidence, health care economics and organizations, Genetic testing, medicine.diagnostic_test, Medical record, social sciences, Data science, Test (assessment), electronic health records, Informatics, ComputingMilieux_COMPUTERSANDSOCIETY, log analysis, AcademicSubjects/SCI01530, AcademicSubjects/MED00010

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f084081312ba7c974029fcf9cb48a946
https://doi.org/10.1093/jamiaopen/ooab014

المؤلفون: Gornick, Michele C., Ryan, Kerry A., Scherer, Aaron M., Scott Roberts, J., De Vries, Raymond G., Uhlmann, Wendy R.

مصطلحات موضوعية: Medically actionable, Genomic results, Health provider‐patient communication, health literacy, Human Genetics, Health Sciences

وصف الملف: application/pdf

Relation: Gornick, Michele C.; Ryan, Kerry A.; Scherer, Aaron M.; Scott Roberts, J.; De Vries, Raymond G.; Uhlmann, Wendy R. (2019). "Interpretations of the Term “Actionable” when Discussing Genetic Test Results: What you Mean Is Not What I Heard." Journal of Genetic Counseling 28(2): 334-342.; https://hdl.handle.net/2027.42/149289; Journal of Genetic Counseling; Rudd, R. E., Kaphingst, K., Colton, T., Gregoire, J., & Hyde, J. ( 2004 ). Rewriting public health information in plain language. Journal of Health Communication, 9 ( 3 ), 195 – 206.; Kraft, S. A., Cho, M. K., Gillespie, K., Halley, M., Varsava, N., Ormond, K. E., & Soo‐Jin Lee, S. ( 2018 ). Beyond consent: building trusting relationships with diverse populations in precision medicine research. The American Journal of Bioethics, 18 ( 4 ), 3 – 20.; Lafata, J. E., Shay, L. A., & Winship, J. M. ( 2017 ). Understanding the influences and impact of patient‐clinician communication in cancer care. Health Expectations, 20 ( 6 ), 1385 – 1392.; Manolio, T. A., Chisholm, R. L., Ozenberger, B., Roden, D. M., Williams, M. S., Wilson, R., & Eng, C. ( 2013 ). Implementing genomic medicine in the clinic: the future is here. Genetics in Medicine, 15 ( 4 ), 258 – 267.; Merriam‐Webster,, ( 2018 ). Actionable. Retrieved from http://www.merriam‐webster.com/dictionary/actionable.; Middha, S., Baheti, S., Hart, S. N., & Kocher, J.‐P. A. ( 2014 ). From days to hours: reporting clinically actionable variants from whole genome sequencing. PLoS One, 9 ( 2 ), e86803.; Nickerson, R. S. ( 1999 ). How we know—and sometimes misjudge—what others know: imputing one’s own knowledge to others. Psychological Bulletin, 125 ( 6 ), 737 – 759.; O’Daniel, J. M., McLaughlin, H. M., Amendola, L. M., Bale, S. J., Berg, J. S., Bick, D., & Rehm, H. L. ( 2017 ). A survey of current practices for genomic sequencing test interpretation and reporting processes in US laboratories. 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R., Roberts, J. S., & Gornick, M. C. ( 2017 ). Public’s views toward return of secondary results in genomic sequencing: It’s (almost) all about the choice. Journal of Genetic Counseling, 26 ( 6 ), 1197 – 1212.; Schwaederle, M., Husain, H., Fanta, P. T., Piccioni, D. E., Kesari, S., Schwab, R. B., & Parker, B. A. ( 2016 ). Detection rate of actionable mutations in diverse cancers using a biopsy‐free (blood) circulating tumor cell DNA assay. Oncotarget, 7 ( 9 ), 9707 – 9717.; Shay, L. A., & Lafata, J. E. ( 2014 ). Understanding patient perceptions of shared decision making. Patient Education and Counseling, 96 ( 3 ), 295 – 301.; Shirts, B. H., Salama, J. S., Aronson, S. J., Chung, W. K., Gray, S. W., Hindorff, L. A., & Tarczy‐Hornoch, P. Z. ( 2015 ). CSER and eMERGE: current and potential state of the display of genetic information in the electronic health record. Journal of the American Medical Informatics Association, 22 ( 6 ), 1231 – 1242.; Sukhai, M. A., Craddock, K. J., Thomas, M., Hansen, A. R., Zhang, T., Siu, L., & Kamel‐Reid, S. ( 2016 ). A classification system for clinical relevance of somatic variants identified in molecular profiling of cancer. Genetics in Medicine, 18 ( 2 ), 128 – 136.; Tait, A. R., Zikmund‐Fisher, B. J., Fagerlin, A., & Voepel‐Lewis, T. ( 2010 ). Effect of various risk/benefit trade‐offs on parents’ understanding of a pediatric research study. Pediatrics, 125 ( 6 ), e1475 – e1482.; Thierry, A., El Messaoudi, S., Mollevi, C., Raoul, J., Guimbaud, R., Pezet, D., & Mathonnet, M. ( 2017 ). Clinical utility of circulating DNA analysis for rapid detection of actionable mutations to select metastatic colorectal patients for anti‐EGFR treatment. Annals of Oncology, 28 ( 9 ), 2149 – 2159.; Vandekerkhove, G. R., Todenhöfer, T., Annala, M., Struss, W. J., Wong, A., Beja, K., & Hennenlotter, J. ( 2017 ). Circulating tumor DNA reveals clinically‐actionable somatic genome of metastatic bladder cancer. Clinical Cancer Research, 23 ( 21 ), 6487 – 6497.; Vidwans, S. J., Turski, M. L., Janku, F., Garrido‐Laguna, I., Munoz, J., Schwab, R., & Kurzrock, R. ( 2014 ). A framework for genomic biomarker actionability and its use in clinical decision making. Oncoscience, 1 ( 10 ), 614 – 623.; Wong, S., Fellowes, A., Doig, K., Ellul, J., Bosma, T., Irwin, D., & Chan, K. ( 2015 ). Assessing the clinical value of targeted massively parallel sequencing in a longitudinal, prospective population‐based study of cancer patients. British Journal of Cancer, 112 ( 8 ), 1411 – 1420.; Wyatt, A. W., Azad, A. A., Volik, S. V., Annala, M., Beja, K., McConeghy, B., & Brahmbhatt, S. ( 2016 ). Genomic alterations in cell‐free DNA and enzalutamide resistance in castration‐resistant prostate cancer. JAMA Oncology, 2 ( 12 ), 1598 – 1606.; Yuan, Y., Liu, L., Chen, H., Wang, Y., Xu, Y., Mao, H., & Li, L. ( 2016 ). Comprehensive characterization of molecular differences in cancer between male and female patients. Cancer Cell, 29 ( 5 ), 711 – 722.; Zikmund‐Fisher, B. J. ( 2017 ). When “actionable” genomic sequencing results cannot be acted upon. JAMA Oncology, 3 ( 7 ), 891 – 892.; American College of Medical Genetics and Genomics ( 2013 ). Incidental findings in clinical genomics: a clarification. Genetics in Medicine, 15 ( 8 ), 664 – 666.; Ananda, G., Mockus, S., Lundquist, M., Spotlow, V., Simons, A., Mitchell, T., & Srivastava, A. ( 2015 ). Development and validation of the JAX Cancer Treatment Profile™ for detection of clinically actionable mutations in solid tumors. Experimental and Molecular Pathology, 98 ( 1 ), 106 – 112.; Astor, J. ( 2011 ). Saying what you mean, meaning what you say: language, interaction and interpretation. Journal of Analytical Psychology, 56 ( 2 ), 203 – 216.; Berg, J. S., Amendola, L. M., Eng, C., Van Allen, E., Gray, S. W., Wagle, N., & Hisama, F. M. ( 2013 ). Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the clinical sequencing exploratory research consortium. Genetics in Medicine, 15 ( 11 ), 860 – 867.; Berkman, N. D., Sheridan, S. L., Donahue, K. E., Halpern, D. J., Viera, A., Crotty, K., & Harden, E. ( 2011 ). Health literacy interventions and outcomes: an updated systematic review. Evidence report/technology assessment, 199, 334 – 941.; Bieg‐Bourne, C. C., Millis, S. Z., Piccioni, D. E., Fanta, P. T., Goldberg, M. E., Chmielecki, J., & Kurzrock, R. ( 2017 ). Next‐generation sequencing in the clinical setting clarifies patient characteristics and potential actionability. Cancer Research, 77 ( 22 ), 6313 – 6320.; Biesecker, L. G., & Green, R. C. ( 2014 ). Diagnostic clinical genome and exome sequencing. New England Journal of Medicine, 370 ( 25 ), 2418 – 2425.; Butler, T. M., Johnson‐Camacho, K., Peto, M., Wang, N. J., Macey, T. A., Korkola, J. E., & Spellman, P. T. ( 2015 ). Exome sequencing of cellfree DNA from metastatic cancer patients identifies clinically actionable mutations distinct from primary disease. PLoS One, 10 ( 8 ), e0136407.; Carr, T. H., McEwen, R., Dougherty, B., Johnson, J. H., Dry, J. R., Lai, Z., & Cruzalegui, F. ( 2016 ). Defining actionable mutations for oncology therapeutic development. Nature Reviews Cancer, 16 ( 5 ), 319 – 329.; Centers for Disease Control and Prevention ( 2016 ). Health Literacy. Retrieved from https://www.cdc.gov/healthliteracy/; Cimino, J. J. ( 1993 ). Saying what you mean and meaning what you say: coupling biomedical terminology and knowledge. Academic Medicine, 68 ( 4 ), 257 – 260.; Clayman, M. L., Bylund, C. L., Chewning, B., & Makoul, G. ( 2016 ). The impact of patient participation in health decisions within medical encounters: a systematic review. 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الاتاحة: https://hdl.handle.net/2027.42/149289
https://doi.org/10.1007/s10897-018-0289-6

المؤلفون: Ingrid A. Holm, Georgia L. Wiesner, Douglas B. Pet, Janet L. Williams, Melanie F. Myers, Ellen Wright Clayton, Laurie L. Novak

المصدر: Genetics in medicine : official journal of the American College of Medical Genetics

مصطلحات موضوعية: 0301 basic medicine, Adult, medicine.medical_specialty, Attitude of Health Personnel, physicians, Medical laboratory, return of research results, 030105 genetics & heredity, Subspecialty, Clinical decision support system, Article, 03 medical and health sciences, Health care, Medicine, Electronic Health Records, Humans, Practice Patterns, Physicians', Genetics (clinical), attitudes, Primary Health Care, business.industry, Genome, Human, Medical record, unsolicited genomic results, Genomics, Decision Support Systems, Clinical, ethics, 3. Good health, 030104 developmental biology, Workflow, Family medicine, Anxiety, Female, medicine.symptom, Return of results, business

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::230a9e5ff3a9a203a8314c520a752737
https://pubmed.ncbi.nlm.nih.gov/29904163

المؤلفون: Ryan, Kerry A., De Vries, Raymond G., Uhlmann, Wendy R., Roberts, J. Scott, Gornick, Michele C.

مصطلحات موضوعية: Public policy, Secondary results, Incidental findings, Disclosure of results, Participant preferences, Ethics, Qualitative analysis, Deliberative democracy, Return of genomic results, Human Genetics, Health Sciences

وصف الملف: application/pdf

Relation: Ryan, Kerry A.; De Vries, Raymond G.; Uhlmann, Wendy R.; Roberts, J. Scott; Gornick, Michele C. (2017). "Public’s Views toward Return of Secondary Results in Genomic Sequencing: It’s (Almost) All about the Choice." Journal of Genetic Counseling 26(6): 1197-1212.; http://hdl.handle.net/2027.42/147026; Journal of Genetic Counseling; Reiff, M., Mueller, R., Mulchandani, S., Spinner, N. B., Pyeritz, R. E., & Bernhardt, B. A. ( 2014 ). A qualitative study of healthcare providers’ perspectives on the implications of genome‐wide testing in pediatric clinical practice. Journal of Genetic Counseling, 23, 474 – 488. doi:10.1007/s10897‐013‐9653‐8.; Klitzman, R. ( 2010 ). Views of discrimination among individuals confronting genetic disease. Journal of Genetic Counseling, 19, 68 – 83. doi:10.1007/s10897‐009‐9262‐8.; Klitzman, R., Appelbaum, P. S., & Chung, W. ( 2013 ). Return of secondary genomic findings vs patient autonomy: implications for medical care. 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الاتاحة: http://hdl.handle.net/2027.42/147026
https://doi.org/10.1007/s10897-017-0095-6

المؤلفون: Gornick, Michele C., Scherer, Aaron M., Sutton, Erica J., Ryan, Kerry A., Exe, Nicole L., Li, Ming, Uhlmann, Wendy R., Kim, Scott Y.H., Roberts, J. Scott, De Vries, Raymond G.

مصطلحات موضوعية: Ethics, Surveys, Participant preferences, Return of secondary genomic results, Deliberative democracy, Human Genetics, Health Sciences

وصف الملف: application/pdf

Relation: Gornick, Michele C.; Scherer, Aaron M.; Sutton, Erica J.; Ryan, Kerry A.; Exe, Nicole L.; Li, Ming; Uhlmann, Wendy R.; Kim, Scott Y.H.; Roberts, J. Scott; De Vries, Raymond G. (2017). "Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing." Journal of Genetic Counseling 26(1): 122-132.; https://hdl.handle.net/2027.42/146892; Journal of Genetic Counseling; Rychetnik, L., Carter, S. M., Abelson, J., Thornton, H., Barratt, A., Entwistle, V. A., …, Glasziou, P. ( 2013 ). Enhancing citizen engagement in cancer screening through deliberative democracy. Journal of the National Cancer Institute, 105, 380 – 386. doi:10.1093/jnci/djs649; Christenhusz, G. M., Devriendt, K., Peeters, H., Van Esch, H., & Dierickx, K. ( 2014 ). The communication of secondary variants: interviews with parents whose children have undergone array‐CGH testing. Clinical Genetics, 86, 207 – 216. doi:10.1111/cge.12354.; Facio, F. M., Eidem, H., Fisher, T., Brooks, S., Linn, A., Kaphingst, K. A., …, Biesecker, B. B. ( 2013 ). Intentions to receive individual results from whole‐genome sequencing among participants in the Clin Seq study. European Journal of Human Genetics, 21, 261 – 265. doi:10.1038/ejhg.2012.179; Fishkin, J. S. ( 2006 ). Beyond polling alone: the quest for an informed public. Critical Review, 18, 157 – 165.; Gastil, J., & Keith, W. M. ( 2005 ). A nation that (sometimes) likes to talk. In J. Gastil & P. Levine (Eds.) The deliberative democracy handbook‐strategies for effective civic engagement in the twenty‐first century (pp. 3 – 19 ). San Francisco, CA: Jossey‐Bass.; Green, R. C., Berg, J. S., Grody, W. W., Kalia, S. S., Korf, B. R., Martin, C. L., … American College of Medical Genetics and Genomics. ( 2013 ). ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine, 15, 565 – 574. doi:10.1038/gim.2013.73; Grove, M. E., Wolpert, M. 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الاتاحة: https://hdl.handle.net/2027.42/146892
https://doi.org/10.1007/s10897-016-9987-0