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In the News ...
Personalized Medicine ...
Second HHS Report on Personalised Health Care. Philippa Brice, PHG Foundation News. 21 November 2008.
The US Department of Health and Human Services (HSS) has published the second report from the Initiative on Personalized Health Care. This programme aims to “improve the safety, quality and effectiveness of healthcare for every patient in the US” by using genomics.
Related: Personalized Health Care: Pioneers, Partnerships, Progress. U.S. Department of Health and Human Services. November 2008. [Contents | PDF - 11 MB]
The Revolution Will Be Personalized - A Cautious HHS Report on the Latest Buzz In Medicine. Rick Weiss, Science Progress. 18 November 2008.
Personalised medicine: report of US President's Advisory Committee. Sowmiya Moorthie, PHG Foundation News. 7 November 2008.
The US President's Council of Advisors on Science and Technology (PCAST) has released a report on personalised medicine containing recommendations on the governmental and private sector action needed in order to realise the benefits of personalised healthcare.
Related: Priorities for Personalized Medicine. President's Council of Advisors on Science and Technology. September 2008. [PDF - 7 MB]
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Genetic Research ...
Bipolar Disorder Genes, Pathways Identified By Indiana University Neuroscientists. Indiana University School of Medicine. 21 November 2008.
Neuroscientists at the Indiana University School of Medicine have created the first comprehensive map of genes likely to be involved in bipolar disorder, according to research published online Nov. 21 in the American Journal of Medical Genetics.
Genetic Screening Offers Little Help for Diabetes Prediction. John Gever, MedPage Today. 19 November 2008.
Screening for gene variants associated with type 2 diabetes does not add much to conventional risk factors in identifying patients likely to develop the disorder, results of two studies showed.
Scientists and Philosophers Find That ‘Gene’ Has a Multitude of Meanings. Natalie Angier, The New York Times. 11 November 2008.
Now: The Rest of the Genome. Carl Zimmer, The New York Times. 10 November 2008.
In a Novel Theory of Mental Disorders, Parents’ Genes Are in Competition. Benedict Carey, The New York Times. 10 November 2008.
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Genetic Research and the Public ...
We need to create a market for genetic-association data. Russ Altman, Building confidence. 13 November 2008.
I am proposing that we handle the issue of “public education” by creating inexpensive and ubiquitous summaries of the health implications of genetic associations, peer review them, disseminate them widely and freely, and allow a market to emerge that helps individuals interpret their genome.
Survey Finds Wide Public Support for Nationwide Study Of Genes, Environment and Lifestyle. The Genetics and Public Policy Center, 12 November 2008.
Four in five Americans support the idea of a nationwide study to investigate the interactions of genes, environment and lifestyle, and three in five say they would be willing to take part in such a study, according to a survey released today.
Personal Medicine, Public Bioethics - Helping America Respond to Changes in Biotechnology and Health Care. Bernard Lo, Science Progress. 4 November 2008.
Advances in biotechnology are entering everyday life at an accelerating pace. But biotech isn’t something to fear. What the next president and the American public needs is smart bioethical advice from a National Bioethics Advisory Council.
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Biobanks and Databases ...
Harmonized Standards for the Genome and Family History. John Halamka, Life as a Healthcare CIO. 19 November 2008.
As one of the first humans to have my genome sequenced, I'm passionate about the standards used to record genomic and family history data.
Sound Ethics: Biobanks for Medical Research. Barbara Lewis and Eric Meslin, Sound Medicine. 2 November 2008.
Eric Meslin talks with Barbara Lewis about the ethical problems involved in banking human tissue.
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Consumer Genomics ...
The Spitterati and Trickle-Down Genomics. Marcy Darnovsky, Mother Jones Blog. 3 November 2008.
Even observers who typically greet DNA claims with unquestioning enthusiasm have raised serious concerns about whether direct-to-consumer gene tests are ready for prime time.
Genome scans for the whole family: 23andMe research director talks about genotyping her kids. Daniel MacArthur, Genetic Future. 30 October 2008.
[G]enotyping your kids isn't always a great idea ...
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PredictER Blog ...
Genetic Privacy: T.J. Maxx and the NIH. Kimberly A. Quaid, PhD, PredictER Blog. 25 November 2008.
What do T.J. Maxx, the V.A. and NIH have in common? They have all been involved in handling personal data in such a way that individual privacy and confidentiality may have been violated.
Patient Attitudes Toward Genotyping: Willingness to Donate. Amy Lewis Gilbert, PredictER Blog. 17 November 2008.
[M]ore women are willing to donate DNA using saliva than blood, and that higher levels of education (college and beyond) and greater knowledge of genes and DNA increase women’s willingness to donate.
Genetic Testing and Personalized Drugs: PredictER at Spirit and Place. Amy Lewis Gilbert, PredictER Blog. 7 November 2008.
As part of the 2008 Spirit & Place Festival, a panel of experts from the Indiana University Center for Bioethics and the Indiana University School of Medicine ... join[ed] together to illustrate the complex intersection of ethics, medicine and science.
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Announcements
and Events ...
Tailored Therapeutics and Implications for Regulatory Endpoints. Panelists: Jerome Yates, MD, MPH; Eric M. Meslin, PhD; Lawrence J. Lesko, PhD, FCP; Silvana Borges, MD. - From Basics to Bench to Bedside ... “Emerging Trends and New Developments in Cancer Discovery, Diagnosis and Treatment” - Cancer-Oncology Summit. December 1-2, 2008. Indianapolis, IN.
Ethical and Legal Considerations in Biobanking. Jennifer Girod, JD, PhD, RN. - Biorepositories: Scientific, Technical and Ethical Considerations. 4 December 2008. Indiana CTSI & IU Simon Cancer Center Biorepository Symposium. Indianapolis, IN.
Ethics, Conflicts of Interest. Eric M. Meslin, PhD; Ora H. Pescovitz, MD; Neal Fearnot, PhD. FDA in the 21st Century: Issues and Their Impact on Medical Technology. The Medical Technology Leadership Forum. December 8-9, 2008. Indianapolis, IN.
Call For Papers - Consortium on Law and Values, Health, Environment & the Life Science. 10th Anniversary Conference - “What’s Next in Law, Health & the Life Sciences? Debating Openness, Access & Accountability”. University of Minnesota, Minneapolis, MN. Deadline 5 January 2009 - PDF.
Who Owns Your Genes? Expert Debate At National Scientific Meeting. Cancer Research UK, Medical News Today. 20 November 2008.
[A] special session of the Clinical Oncological Society of Australia Annual Scientific Meeting ...
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Publications ...
Bandelt HJ, et al. The brave new era of human genetic testing. Bioessays. 2008 Nov;30(11-12):1246-51.
[View abstract or record.]
Boccia S, et al. The integration of genome-based information for common diseases into health policy and healthcare as a major challenge for Public Health Genomics: The example of the methylenetetrahydrofolate reductase gene in non-cancer diseases. Mutat Res. 2008 Oct 21.
[View abstract or record.]
Chen DT, et al. Stroke genetic research and adults with impaired decision-making capacity: a survey of IRB and investigator practices. Stroke. 2008 Oct;39(10):2732-5.
[View abstract or record.]
Coors M, et al. Directives for retained DNA: preferences of adolescent patients with substance and conduct problems and their siblings. Am J Bioeth. 2008 Oct;8(10):77-9; discussion W7-8.
[View abstract or record.]
Gibson E, et al. Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks. BMC Med Ethics. 2008 Nov 14;9(1):17.
[View abstract or record.]
Green RC and Annas GJ. The Genetic Privacy of Presidential Candidates. N Engl J Med. 2008 Nov 20;359(21):2192-2193.
[View abstract or record.]
Greenbaum D, et al. Genomic anonymity: have we already lost it? Am J Bioeth. 2008 Oct;8(10):71-4; discussion W7-8.
[View abstract or record.]
Haas DM, et al. Patient attitudes toward genotyping in an urban women's health clinic. Obstet Gynecol. 2008 Nov;112(5):1023-8.
[View abstract or record.]
Hardy BJ, et al. The next steps for genomic medicine: challenges and opportunities for the developing world. Nat Rev Genet. 2008 Oct;9 Suppl 1:S23-7.
[View abstract or record.]
Hardy BJ, et al. From diversity to delivery: the case of the Indian Genome Variation initiative. Nat Rev Genet. 2008 Oct;9 Suppl 1:S9-14.
[View abstract or record.]
Harmon SH. Ethical rhetoric: genomics and the moral content of UNESCO's "universal" declarations. J Med Ethics. 2008 Nov;34(11):e24.
[View abstract or record.]
Hudson K. The health benefits of genomics: out with the old, in with the new. Health Aff (Millwood). 2008 Nov-Dec;27(6):1612-5.
[View abstract or record.]
Hull SC, et al. Patients' views on identifiability of samples and informed consent for genetic research. Am J Bioeth. 2008 Oct;8(10):62-70.
[View abstract or record.]
Hull SC and Wilfond BS. What does it mean to be identifiable? Am J Bioeth. 2008 Oct;8(10):7-8.
[View abstract or record.]
Kaufman D, et al. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med. 2008 Nov;10(11):831-9.
[View abstract or record.]
McGuire AL. Identifiability of DNA data: the need for consistent federal policy. Am J Bioeth. 2008 Oct;8(10):75-6; discussion W7-8.
[View abstract or record.]
McLaughlin RH. Participation in research and social context: the case of population-based cancer registration, surveillance, and research. Am J Bioeth. 2008 Oct;8(10):41-2; discussion W3-4.
[View abstract or record.]
Nyrhinen T, et al. Are Patient Rights to Information and Self-Determination in Diagnostic Genetic Testing Upheld? A Comparison Of Patients' and Providers' Perceptions. J Genet Couns. 2008 Nov 1.
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Potter BK, et al. Guidance for considering ethical, legal, and social issues in health technology assessment: application to genetic screening. Int J Technol Assess Health Care. 2008 Fall;24(4):412-22.
[View abstract or record.]
Seguin B, et al. Universal health care, genomic medicine and Thailand: investing in today and tomorrow. Nat Rev Genet. 2008 Oct;9 Suppl 1:S14-9.
[View abstract or record.]
Willison DJ, et al. Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue. BMC Med Ethics. 2008 Nov 19;9(1):18.
[View abstract or record.]
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