Journal of Empirical Research on
Human Research Ethics
2014, Vol. 9(3) 56–58
© The Author(s) 2014
Reprints and permissions:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/1556264614540595
jre.sagepub.com
Tissue and Data Banking
High throughput techniques for genomic sequencing create
vast amounts of genetic data that may give rise to new med-
ical, ethical, legal, and social issues. Social scientists have
previously carried out research with lay people and research
participants (Godard, Marshall, & Laberge, 2007;
Henderson et al., 2008; Hoeyer, Olofsson, Mjorndal, &
Lynoe, 2004; Kaufman, Murphy, Scott, & Hudson, 2008)
about their attitudes toward these new techniques and their
implications for various aspects of life. Very little research
has been reported regarding the attitudes of the researchers
who were actually carrying out the sequencing. There has
been some exploration of scientists’ opinions regarding
whole genome sequencing but it has often been directed
toward specific issues such as the return of research results
(Grove, Wolpert, Cho, Lee, & Ormond, 2013; Meulenkamp,
Gevers, Bovenberg, & Smets, 2012; Knoppers, Joly,
Simard, & Durocher, 2006; Miller et al., 2012b) and their
opinions about ethical review of their research (Edwards
et al., 2011; Edwards et al., 2012; Whiteley, Kanellopoulou, &
Kaye, 2012). Their opinions about having their own genome
sequenced have not been widely discussed or reported thus
far apart from some high profile scientists such as Craig
Venter (Ledford, 2007) and James Watson (Check, 2007).
To investigate attitudes toward these issues among the
people actually generating, managing, and analyzing such
data, we devised a pilot study, under the auspices of the
European project GEUVADIS, a coordination action that
is looking at Genetic European Variation in Disease. A
questionnaire was compiled and distributed among the par-
ticipating scientists. We also carried out some discussion
groups to explore the ethical and social issues that the scien-
tists themselves felt were important or relevant (66 ques-
tionnaires and five discussion groups). The attached article
describes these processes in greater detail. The issues
explored included source of samples, type of consent,
involvement of family, data protection, communication of
results, and the right to withdraw.
Preliminary results demonstrate a wide range of attitudes
toward genetic information and personal data, ranging from
highly protective to favoring widespread sharing through
databases. The most important issues for the scientists were
the provision of clear and transparent information for
research participants about the research and the various
uses of their data.
There has also been much discussion about whether a
whole genome sequence is always identifiable even if it is
not linked to other personal demographic data and whether
it is possible to anonymize such data entirely (Gymrek,
McGuire, Golan, Halperin, & Erlich, 2013; Lowrance &
540595JRE XX X 10.1177/1556264614540595Journal of Empirical Research on Human Research EthicsMiller et al.
research-article 2014
1
Inserm and University of Toulouse, France
2
Center for Genomic Regulation, Barcelona, Spain
Corresponding Author:
Jane Miller, Inserm and University of Toulouse 3, Paul Sabatier, UMR
1027, 37 allées Jules Guesde, F-31000 Toulouse, France.
Email: Jmillerg73@gmail.com
Professionals’ Attitudes Regarding Large-
Scale Genetic Information Generated
Through Next Generation Sequencing in
Research: A Pilot Study
Jane Miller
1
, Alexandra Soulier
1
, Gabrielle Bertier
2
,
and Anne Cambon-Thomsen
1
Abstract
Under the auspices of a multi-national European scientific project involving whole genome sequencing, GEUVADIS, we set
out to investigate the attitudes of the participating scientists of having their own genome sequenced. The views of such
researchers on this subject have not been fully explored before and we utilized questionnaires and discussion groups to
elicit their opinions. Many said that it was the first time that they had an opportunity to discuss ethical and social issues
about sequencing. The many ongoing multi-national science projects present a good opportunity for social science research
involving scientists and would benefit from rigorous research methodology, taking into account any language barriers.
Keywords
whole genome sequencing, attitudes, scientists, researchers, ethics