Literature DB >> 20805701

Research ethics in the era of personalized medicine: updating science's contract with society.

Eric M Meslin1, Mildred K Cho.   

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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Year:  2010        PMID: 20805701      PMCID: PMC2951727          DOI: 10.1159/000319473

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  22 in total

1.  Science's new social contract with society.

Authors:  M Gibbons
Journal:  Nature       Date:  1999-12-02       Impact factor: 49.962

2.  Underwhelmed: hyperbole, regulatory policy, and the genetic revolution.

Authors:  T Caulfield
Journal:  McGill Law J       Date:  2000-05

3.  Impure science: AIDS, activism, and the politics of knowledge.

Authors:  S Epstein
Journal:  Med Soc (Berkeley)       Date:  1996

4.  Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research.

Authors:  Klaus Hoeyer; Bert-Ove Olofsson; Tom Mjörndal; Niels Lynöe
Journal:  Scand J Public Health       Date:  2004       Impact factor: 3.021

5.  The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

Authors:  Michelle M Mello; Leslie E Wolf
Journal:  N Engl J Med       Date:  2010-06-09       Impact factor: 91.245

6.  Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research.

Authors:  Benjamin R Bates; John A Lynch; Jennifer L Bevan; Celeste M Condit
Journal:  Soc Sci Med       Date:  2005-01       Impact factor: 4.634

Review 7.  Systematic review of qualitative studies exploring parental beliefs and attitudes toward childhood vaccination identifies common barriers to vaccination.

Authors:  Edward Mills; Alejandro R Jadad; Cory Ross; Kumanan Wilson
Journal:  J Clin Epidemiol       Date:  2005-11       Impact factor: 6.437

8.  Informed consent and biobanks.

Authors:  Ellen Wright Clayton
Journal:  J Law Med Ethics       Date:  2005       Impact factor: 1.718

9.  Building on relationships of trust in biobank research.

Authors:  M G Hansson
Journal:  J Med Ethics       Date:  2005-07       Impact factor: 2.903

10.  Updating protections for human subjects involved in research. Project on Informed Consent, Human Research Ethics Group.

Authors:  J Moreno; A L Caplan; P R Wolpe
Journal:  JAMA       Date:  1998-12-09       Impact factor: 56.272

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  14 in total

1.  Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources.

Authors:  Caroline Brall; Els Maeckelberghe; Rouven Porz; Jihad Makhoul; Peter Schröder-Bäck
Journal:  Public Health Genomics       Date:  2017-03-14       Impact factor: 2.000

2.  Thematic analysis of cardiac care patients' explanations for declining contribution to a genomic research-based biobank.

Authors:  Pamela Holtzclaw Williams; Lynne S Nemeth; Jennifer E Sanner; Lorraine Q Frazier
Journal:  Am J Crit Care       Date:  2013-07       Impact factor: 2.228

3.  Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

Authors:  Patricia A Deverka; Dierdre Gilmore; Jennifer Richmond; Zachary Smith; Rikki Mangrum; Barbara A Koenig; Robert Cook-Deegan; Angela G Villanueva; Mary A Majumder; Amy L McGuire
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

4.  Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan.

Authors:  Yasuko Takezawa; Kazuto Kato; Hiroki Oota; Timothy Caulfield; Akihiro Fujimoto; Shunwa Honda; Naoyuki Kamatani; Shoji Kawamura; Kohei Kawashima; Ryosuke Kimura; Hiromi Matsumae; Ayako Saito; Patrick E Savage; Noriko Seguchi; Keiko Shimizu; Satoshi Terao; Yumi Yamaguchi-Kabata; Akira Yasukouchi; Minoru Yoneda; Katsushi Tokunaga
Journal:  BMC Med Ethics       Date:  2014-04-23       Impact factor: 2.652

5.  The evolution of withdrawal: negotiating research relationships in biobanking.

Authors:  Karen Melham; Linda Briceno Moraia; Colin Mitchell; Michael Morrison; Harriet Teare; Jane Kaye
Journal:  Life Sci Soc Policy       Date:  2014-10-05

6.  Revisiting respect for persons in genomic research.

Authors:  Debra J H Mathews; Leila Jamal
Journal:  Genes (Basel)       Date:  2014-01-22       Impact factor: 4.096

7.  Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.

Authors:  Nicholas Anderson; Caleb Bragg; Andrea Hartzler; Kelly Edwards
Journal:  Appl Transl Genom       Date:  2012-12-01

8.  Building a data sharing model for global genomic research.

Authors:  Patricia Kosseim; Edward S Dove; Carman Baggaley; Eric M Meslin; Fred H Cate; Jane Kaye; Jennifer R Harris; Bartha M Knoppers
Journal:  Genome Biol       Date:  2014-08-11       Impact factor: 13.583

9.  Dynamic consent: a patient interface for twenty-first century research networks.

Authors:  Jane Kaye; Edgar A Whitley; David Lund; Michael Morrison; Harriet Teare; Karen Melham
Journal:  Eur J Hum Genet       Date:  2014-05-07       Impact factor: 4.246

10.  Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.

Authors:  J Patrick Woolley; Michelle L McGowan; Harriet J A Teare; Victoria Coathup; Jennifer R Fishman; Richard A Settersten; Sigrid Sterckx; Jane Kaye; Eric T Juengst
Journal:  BMC Med Ethics       Date:  2016-06-04       Impact factor: 2.652

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