Ethical scenario presentation

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Public attitudes towards the use of primary care patient
record data in medical research without consent: a qualitative
study
Authors: MR Robling, K Hood, H Houston, R Pill, J Fay and HM Evans
Date: Feb. 2004
From: Journal of Medical Ethics(Vol. 30, Issue 1)
Publisher: BMJ Publishing Group Ltd.
Document Type: Article
Length: 5,154 words
Content Level: (Level 5)

Abstract: 
Objectives: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data
within research. However, there is currently little awareness of public views about such research. The authors sought to explore
attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient
consent was not being sought.

Methods: 49 members of the public and four non-medical members of local community health councils in See end of article for South
Wales, UK gave their views on the value and acceptability of three current research scenarios, each authors’ affiliations describing
access to data without patient consent.

Results: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general
practitioners as researchers was questioned. There was general support for University of research but also concerns expressed
about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to
data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited
much anxiety. The key informants were equally critical of the scenarios and generally less accepting.

Conclusions: This exploratory study has highlighted a number of areas of public c

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Taking the patient’s side: the ethics of pharmacogenetics
Author: Mats G Hansson
Date: Jan. 2010
From: Personalized Medicine(Vol. 7, Issue 1)
Publisher: Future Medicine Ltd.
Document Type: Report
Length: 8,129 words
DOI: http://dx.doi.org/10.2217/pme.09.47

Full Text:
Author(s): Mats G Hansson 1

KEYWORDS

:

bioethics; ethics; hype; informed consent; justice; personalized medicine; pharmacogenetics; race; risk management

Developments within pharmacogenetics have received a great deal of attention from ethicists, lawyers and social scientists (for some
recent examples, see [1-6] ). One may get the impression that truly new and urgent ethical problems have arisen that need to be
sorted out before any large-scale introduction of pharmacogenetics into clinical practice; however, this appears not to be the case.
The ethical issues that are suggested to capture our interest are the same ones that have been focused on and debated since the
early days of gene transfer and genetic diagnosis. Other issues, such as the casting of roles between scientists, industry and
government, have been thoroughly discussed within moral philosophy for centuries. Of course, these ethical issues may still be of
relevance to pharmacogenetics but one should keep earlier discussions in mind. This perspective will provide a critical overview of
some of the major themes of the ethics debate that are of relevance to pharmacogenetics.

One group of ethical issues discussed is related to the handling of genetic information of individuals in association with genotyping for
treatment efficacy and the avoidance of adverse reactions to drugs. Here, the old questions concerning third-party access to genetic
information are revisited again. Questions regarding privacy are asked, which is also belie

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AVAILABLE” and are not retained in our systems. CENGAGE LEARNING AND ITS LICENSORS SPECIFICALLY DISCLAIM ANY
AND ALL EXPRESS OR IMPLIED WARRANTIES, INCLUDING WITHOUT LIMITATION, ANY WARRANTIES FOR AVAILABILITY,
ACCURACY, TIMELINESS, COMPLETENESS, NON-INFRINGEMENT, MERCHANTABILITY OR FITNESS FOR A PARTICULAR
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machine generated PDF functionality and any output derived therefrom.

‘Someday it will be the norm’: physician perspectives on the
utility of genome sequencing for patient care in the
MedSeqProject
Authors: Jason L Vassy, Kurt D Christensen, Melody J Slashinski, Denise M Lautenbach, Sridharan Raghavan and Jill Oliver
Robinson
Date: Jan. 2015
From: Personalized Medicine(Vol. 12, Issue 1)
Publisher: Future Medicine Ltd.
Document Type: Report
Length: 7,049 words
DOI: http://dx.doi.org/10.2217/pme.14.68

Full Text:
Author(s): Jason L Vassy [*] aff1 aff2 aff3 , Kurt D Christensen aff3 aff4 , Melody J Slashinski aff5 , Denise M Lautenbach aff3 aff4 ,
Sridharan Raghavan aff3 aff6 , Jill Oliver Robinson aff7 , Jennifer Blumenthal-Barby aff7 , Lindsay Zausmer Feuerman aff7 , Lisa
Soleymani Lehmann aff2 aff3 aff6 , Michael F Murray aff9 , Robert C Green aff3 aff4 , Amy L McGuire aff7

Keywords:

genomics; high-throughput nucleotide sequencing; pharmacogenetics; physician’s practice patterns; qualitative research

The claim that genomics will revolutionize the practice of medicine has been the subject of hope and hype, promise and skepticism
[1-3 ]. Routine testing for genetic conditions such as phenylketonuria has been a part of clinical care since the 1960s, and today many
general practitioners have at least some experience with targeted genetic testing for conditions such as cystic fibrosis,
hemochromatosis and factor V Leiden thrombophilia [ 4-6 ]. However, the sequencing of the human genome in 2003 enabled
genome-wide analyses of unprecedented scope and resolution, such that most variation in the human genome can now be analyzed
with a single test. Genome sequencing has demonstrated clinical utility in specialized settings, including the diagnosis and
management of rare diseases, infectious disease outbreaks and cancer [7-11 ]. However, the widespr

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