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Articles

Using and abusing evidence in science and health policy

Edited by: Prof Timothy Caulfield

Collection published: 31 January 2013

Last updated: 8 August 2013


Evidence Use AbuseThis series of articles investigates how evidence is used in a variety of health and science policy domains, specifically considering the ways in which it is has been used (or misused) and represented (or misrepresented) in relevant laws, policies and regulations, in addition to the numerous challenges and barriers to its use in policy development.


Articles published in this series were invited from delegates at the meeting "Using and Abusing Evidence in Science and Health Policy" held in Banff, Alberta on May 30th-June 1st, 2012. The conference organizers would like to thank the following companies who supported the meeting and part-funded some publication charges: Alberta Innovates - Health Solutions, the Alberta Cancer Foundation, the Allergy Genes and Environment Network (AllerGen), the Archon Genomics X-Prize presented by Express Scripts, the Canadian Breast Cancer Foundation - Prairies, NWT Region, the Cancer Stem Cell Consortium, Genome Alberta, the Interagency Advisory Panel on Research Ethics, the Stem Cell Network, the University of Alberta's Faculty of Law, and the University of Alberta's Killam Fund.


All articles have been independently prepared by the authors and have been subject to the standard peer review processes of the journals.


Research article   Open Access Highly Accessed

Triangulating perspectives on functional neuroimaging for disorders of mental health

James A Anderson, Ania Mizgalewicz, Judy Illes BMC Psychiatry 2013, 13:208 (8 August 2013)

Abstract | Full text | PDF | ePUB | PubMed

Research   Open Access Highly Accessed

Survey of European clinical geneticists on awareness, experiences and attitudes towards direct-to-consumer genetic testing

Heidi Howard, Pascal Borry Genome Medicine 2013, 5:45 (22 May 2013)

Abstract | Full text | PDF | PubMed |  Editor’s summary

An online survey of European clinical geneticists found high awareness of direct-to-consumer genetic testing but most participants did not agree with such testing for severe conditions.

Opinion   Free Highly Accessed

Harm, hype and evidence: ELSI research and policy guidance

Timothy Caulfield, Subhashini Chandrasekharan, Yann Joly, Robert Cook-Deegan Genome Medicine 2013, 5:21 (26 March 2013)

Abstract | Full text | PDF | PubMed |  Editor’s summary

Timothy Caulfield and colleagues argue that the development of policies for genomic research and medicine will be improved by efforts to incorporate evidence from ELSI research.

Research article   Open Access Highly Accessed

Cancer patient perceptions on the ethical and legal issues related to biobanking

Zubin Master, Jaime O Claudio, Christen Rachul, Jean CY Wang, Mark D Minden, Timothy Caulfield BMC Medical Genomics 2013, 6:8 (8 March 2013)

Abstract | Full text | PDF | PubMed |  Editor’s summary

In a survey of perceptions of leukemia patients towards biobanking research ethics, majorities favoured one-time consent and retaining the right to withdrawal, and almost all favoured being informed of incidental findings relevant to their health.

Research article   Open Access Highly Accessed

Bioethics in popular science: evaluating the media impact of The Immortal Life of Henrietta Lacks on the biobank debate

Matthew C Nisbet, Declan Fahy BMC Medical Ethics 2013, 14:10 (28 February 2013)

Abstract | Full text | PDF | PubMed

Debate   Open Access Highly Accessed

“Media, politics and science policy: MS and evidence from the CCSVI Trenches”

Daryl Pullman, Amy Zarzeczny, André Picard BMC Medical Ethics 2013, 14:6 (12 February 2013)

Abstract | Full text | PDF | PubMed |  Editor’s summary

The story of Dr. Paolo Zamboni implicating chronic cerebrospinal venous insufficiency (CCSVI) in the development of multiple sclerosis, along with “liberation therapy” as a possible cure, is told from three contrasting perspectives.

Open debate   Open Access Highly Accessed

Constructing narratives of heroism and villainy: case study of Myriad's BRACAnalysis® compared to Genentech's Herceptin®

A Baldwin, Robert Cook-Deegan Genome Medicine 2013, 5:8 (31 January 2013)

Abstract | Full text | PDF | PubMed |  Editor’s summary

A comparison of the development of Myriad's BRCAnalysis and Genetech's Herceptin shows that business practices have an impact on the public perception of both companies.

Research article   Open Access

Genetic discrimination and life insurance: a systematic review of the evidence

Yann Joly, Ida Ngueng Feze, Jacques Simard BMC Medicine 2013, 11:25 (31 January 2013)

Abstract | Full text | PDF | PubMed | Cited on BioMed Central |  Editor’s summary

Evidence from a systematic review of genetic discrimination studies shows that individual cases of discrimination exist in the context of life insurance, but policy action cannot be justified at present due to limitations of the studies.

Research article   Open Access

Emerging issues in paediatric health research consent forms in Canada: working towards best practices

Edward S Dove, Denise Avard, Lee Black, Bartha M Knoppers BMC Medical Ethics 2013, 14:5 (30 January 2013)

Abstract | Full text | PDF | PubMed

Debate   Open Access Highly Accessed

Addressing the policy cacophony does not require more evidence: an argument for reframing obesity as caloric overconsumption

Jacob J Shelley BMC Public Health 2012, 12:1042 (30 November 2012)

Abstract | Full text | PDF | PubMed

Correspondence   Open Access

Is belief larger than fact: expectations, optimism and reality for translational stem cell research

Tania Bubela, Matthew D Li, Mohamed Hafez, Mark Bieber, Harold Atkins BMC Medicine 2012, 10:133 (6 November 2012)

Abstract | Full text | PDF | PubMed |  Editor’s summary

Tania Bubela et al. provide empirical evidence of a disconnect between the reality of progress in clinical application of stem cell therapies and public expectations, so the reporting of expected benefits and realistic timelines of such therapies should be made more transparent.