Genomic medicine: considerations for health professionals and the public
Tóm tắt
Advances in human genomics are ushering in a new era of predictive, preventative and personalized approaches to medicine. However, as the integration of genomic medicine progresses, the health community has a responsibility to communicate to the public the risks and challenges of genetic information. A possible knowledge transfer framework is outlined as a means to bridge the practical uses of genetics within various ethical, social and economic contexts. Tools and resources are needed to help clinicians understand genetic risks and help them inform the public appropriately and effectively.
Tài liệu tham khảo
McBride CM, Alford SH, Reid RJ, Larson EB, Baxevanis AD, Brody LC: Putting science over supposition in the arena of personalized genomics. Nat Genet. 2008, 40: 939-942. 10.1038/ng0808-939.
Trinidad SB, Fryer-Edwards K, Crest A, Kyler P, Lloyd-Puryear MA, Burke W: Educational needs in genetic medicine: primary care perspectives. Community Genet. 2008, 11: 160-165. 10.1159/000113878.
Haga SB, Khoury MJ, Burke W: Genomic profiling to promote a healthy lifestyle: not ready for prime time. Nat Genet. 2003, 34: 347-350. 10.1038/ng0803-347.
Ginsburg GS: Genomic medicine: grand challenges in the translation of genomics to human health. Eur J Hum Genet. 2008, 16: 873-874. 10.1038/ejhg.2008.115.
National Human Genome Research Institute: Applying Genomics to Clinical Problems - Diagnostics, Preventive Medicine, Pharmacogenomics: a White Paper for the National Human Genome Research Institute. 2008, Bethesda: National Institutes of Health
Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer-Edwards K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN, Sugarman J, Timmons M: Research ethics recommendations for whole-genome research: consensus statement. PLoS Biol. 2008, 6: e73-10.1371/journal.pbio.0060073.
National Human Genome Research Institute: A Vision for the Future of Genomics - Education and Community Engagement: a White Paper for the National Human Genome Research Institute. 2008, Bethesda: National Institutes of Health
Scheuner MT, Sieverding P, Shekelle PG: Delivery of genomic medicine for common chronic adult diseases: a systematic review. JAMA. 2008, 299: 1320-1334. 10.1001/jama.299.11.1320.
Landry R: Knowledge Transfer as a Value Creation Process. 2008, Vancouver: International Association for Management of Technology, 1-13.
National Coalition for Health Professional Education in Genetics: Highlights from NCHPEG's 9th Annual Meeting: Risk Assessment and Communication of Risk. 2006
Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L: The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention?. Genet Med. 2007, 9: 665-674.
CDC National Office of Public Health Genomics: Evaluation of Genomic Applications in Practice and Prevention: Gene Expression Profiling for Breast Cancer Management and Prognosis. 2008, Atlanta: CDC National Office of Public Health Genomics
Ginsburg GS: Genomic medicine: 'Grand challenges' in the translation of genomics to human health. Eur J Hum Genet. 2008, 16: 873-874. 10.1038/ejhg.2008.115.
Hudson K, Javitt G, Burke W, Byers P: ASHG Statement on direct-to-consumer genetic testing in the United States. Obstet Gynecol. 2007, 110: 1392-1395.
Uhlmann WR, Guttmacher AE: Key internet genetics resources for the clinician. JAMA. 2008, 299: 1356-1358. 10.1001/jama.299.11.1356.
Public Health Genomics. [http://www.cdc.gov/genomics/]
HumGen International. [http://www.humgen.umontreal.ca/int/]
Burgess M, O'Doherty K, Secko D: Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement. Per Med. 2008, 5: 285-296. 10.2217/17410541.5.3.285.
Veach PM, Bartels DM, LeRoy BS: Ethical and professional challenges by patients with genetic concerns: a report of focus group discussions with genetic counselors, physicians, and nurses. J Genet Couns. 2001, 10: 97-119. 10.1023/A:1009487513618.
National Human Genome Research Institute: Applying Genomics to Clinical Problems - Therapeutics: a White Paper for the National Human Genome Research Institute. 2008, Bethesda: National Institutes of Health