Research Ethics in the Era of Personalized Medicine Updating Science’s Contract with Society
With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an...
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Published in | Community genetics Vol. 13; no. 6; pp. 378 - 384 |
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Main Authors | , |
Format | Journal Article |
Language | English |
Published |
Basel, Switzerland
S. Karger AG
01.01.2010
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Subjects | |
Online Access | Get full text |
ISSN | 1662-4246 1662-8063 1662-8063 |
DOI | 10.1159/000319473 |
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Abstract | With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles – particularly the principles that support a cautious approach to science – and propose a reframing of the ‘social contract’ between science and society that emphasizes reciprocity and meeting public needs. |
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AbstractList | With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles – particularly the principles that support a cautious approach to science – and propose a reframing of the ‘social contract’ between science and society that emphasizes reciprocity and meeting public needs. With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles - particularly the principles that support a cautious approach to science - and propose a reframing of the 'social contract' between science and society that emphasizes reciprocity and meeting public needs.With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles - particularly the principles that support a cautious approach to science - and propose a reframing of the 'social contract' between science and society that emphasizes reciprocity and meeting public needs. With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles - particularly the principles that support a cautious approach to science - and propose a reframing of the 'social contract' between science and society that emphasizes reciprocity and meeting public needs. Copyright © 2010 S. Karger AG, Basel [PUBLICATION ABSTRACT] |
Author | Cho, Mildred K. Meslin, Eric M. |
AuthorAffiliation | a Indiana University Center for Bioethics, IU School of Medicine, Indianapolis, Ind., USA b Department of Pediatrics, Stanford Center for Biomedical Ethics, Stanford University, Palo Alto, Calif., USA |
AuthorAffiliation_xml | – name: a Indiana University Center for Bioethics, IU School of Medicine, Indianapolis, Ind., USA – name: b Department of Pediatrics, Stanford Center for Biomedical Ethics, Stanford University, Palo Alto, Calif., USA |
Author_xml | – sequence: 1 givenname: Eric M. surname: Meslin fullname: Meslin, Eric M. – sequence: 2 givenname: Mildred K. surname: Cho fullname: Cho, Mildred K. |
BackLink | https://www.ncbi.nlm.nih.gov/pubmed/20805701$$D View this record in MEDLINE/PubMed |
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Cites_doi | 10.1159%2F000279622 10.1038%2F464649a 10.1038%2F35011576 10.1016%2Fj.jclinepi.2005.09.002 10.1111%2Fj.1748-720X.2005.tb00206.x 10.1056%2FNEJMp1005203 10.1126%2Fscience.325_28 10.2105%2FAJPH.2008.157099 10.1136%2Fjme.2004.009456 10.1097%2FGIM.0b013e3181859959 10.1017%2FS1745855206004029 10.1179%2F030801805X42054 10.1159%2F000164216 10.1016%2Fj.socscimed.2004.05.012 10.1641%2F0006-3568%282004%29054%5B0331%3ARB%5D2.0.CO%3B2 10.1080%2F14034940310019506 10.1097%2FGIM.0b013e3181afbaed 10.1038%2Fsj.embor.7400740 10.1038%2Fclpt.2008.89 10.1515%2FJIBL.2007.010 |
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References_xml | – reference: Sinks T, Wagner W, Farquhar D: The science and the law of toxics. J Law Med Ethics 2007;35:63–68. – reference: Guston DH: Retiring the social contract for science. Issues Sci Technol 2000;summer: 32–36. – reference: Kitcher P: Responsible biology. Bioscience 2004;54:331–336.10.1641%2F0006-3568%282004%29054%5B0331%3ARB%5D2.0.CO%3B2 – reference: Johnson AD, et al: Notifiable genetic variants on commercially available SNP arrays: implications for research participants in genome-wide association studies for cardiovascular disease. Circulation 2010;120(suppl 559):1–3. – reference: Yancy C, Miller ED, Lucier G: Investing in recovery and discovery. Science Progress 2010. http://www.scienceprogress.org/2010/ 02/medical-research/. – reference: Joseph JW, et al: Empirical data about women’s attitudes toward a biobank focused on pregnancy outcomes. Am J Med Genet A 2008;146:305–311.18203186 – reference: Brick M: Texas school board set to vote textbook revisions. 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SubjectTerms | Ethics, Research Human Genome Project Humans Original Paper Precision Medicine Quality of life Research ethics Societies Special Topic Section: The Age of Personal Genomics. Editor: Timothy Caulfield (Edmonton Special Topic Section: The Age of Personal Genomics. Editor: Timothy Caulfield (Edmonton, Alta.). Original Paper |
Subtitle | Updating Science’s Contract with Society |
Title | Research Ethics in the Era of Personalized Medicine |
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