www.sciencemag.org SCIENCE VOL 343 28 FEBRUARY 2014 969
Ant against ant Turning microtubules
Amsterdam, 1081 HV, Netherlands. 3Centre for Society and
the Life Sciences, Nijmegen, 6500 GL, Netherlands. 4Center
for Medical Systems Biology, Leiden, 2300 RC, Netherlands.
*Corresponding author. E-mail: w.dondorp@
References and Notes
1. C. G. van El et al., Eur. J. Hum. Genet. 21, 580 (2013).
2. The authors are writing on behalf of the ESHG Public and
Professional Policy Committee.
WE FULLY AGREE WITH A. C. J. W. JANSSENS
and W. K. Dondorp et al. on the importance
of considering very carefully what conclusions from analysis of raw data should be
returned to data donors. However, that is
very different from enabling patients and
research participants to access the raw data.
The two processes serve different purposes:
The returning of findings aims at providing
research participants and patients (and their
doctors) with analytically valid, clinically
relevant, and, if possible, clinically actionable information. Indeed, in this situation,
the professional responsibility of health care
professionals is a particular one.
The dangers, as perceived by Janssens
and by Dondorp et al., of communicating
imperfect data and an uncertain interpreta-
tion to patients, are inherent to the clinical
encounter and part of professional liability,
as we emphasize in our Policy Forum. This
responsibility is very different in enabling
access to raw data. Moreover, in any con-
text, personal risk assessments and the bal-
ancing with expected benefits are highly
individual processes and not just a matter
of professional expertise (1). It will need
to be made very clear to those wanting to
access their raw data sets that these may con-
tain mistakes and inaccuracies, and that they
may—in most cases—not be actionable in
an immediate way. We expect that as a result,
many patients and research participants will
not actually access their raw data. But this
decision needs to be up to them. The same
applies to personal raw data in other types
of research, such as the social sciences, in
which access to individual metadata has no
practical utility for participants but serves
transparency and is the cornerstone of a
reciprocal relationship between participants
Dondorp et al. raise the issue of
conflating research and clinical care.
They emphasize, first, that patients
need to consent to become research
participants and thus data donors.
In practice, however, in many clinical settings, becoming a donor of
research data or samples may occur
by default, and individuals need to
be aware of this and opt out if they
do not want their data to be included
(2). This underscores once more the
asymmetrical relationship between
patients on the one hand and clinicians or researchers on the other. Second,
Dondorp et al., referring to the need to restrict
analyses to avoid the unnecessary generation
of incidental findings, state that discovery is
the aim of research and not of health care.
However, such a dichotomy does not always
correspond with the wishes of patients:
Many patients want research to be done, for
their own benefit and that of others, and they
donate their data for research. In particular in
genetics, patients and families, as partners in
research, often seek the most comprehensive
approach to find their disease-causing mutations (3, 4).
JEANTINE E. LUNSHOF,1,2 GEORGE M. CHURCH,1
1Department of Genetics, Harvard Medical School, Boston,
MA 02115, USA. 2Department of Molecular Cell Physiology,
VU University Amsterdam, 1081 HV Amsterdam,
Netherlands. 3Department of Social Science, Health and
Medicine, King’s College London, London WC2R 2LS, UK.
*Corresponding author. E-mail: email@example.com.
1. M. N. Meyer, Admin. Law Rev. 65, 237 (2013).
2. K. B. Brothers et al., Per. Med. 10, 349 (2013).
3. E. A. Worthey et al., Genet. Med. 13, 255 (2011).
4. B. Maher, Nature 449, 773 (2007).
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754). A production error resulted in the omission of the end of the second sentence of the abstract. The sentence should
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Editors’ Choice: “A question of balance” by H. J. Smith (3 January, p. 7). Lupascu et al. reported that in High Arctic
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