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ETHICS AND CONSENT
WRITTEN OR VERBAL CONSENT?
Whether informed consent is obtained in writing through
a detailed consent form, by means of an informative
statement, or verbally, depends on the nature of the
research, the kind of data gathered, the data format and
how the data will be used.
For detailed interviews or research where personal,
sensitive or confidential data are gathered:
• the use of written consent forms is recommended to
assure compliance with the Data Protection Act and
with ethical guidelines of professional bodies and
funders
• written consent typically includes an information sheet
and consent form signed by the participant
• verbal consent agreements can be recorded together
with audio or video recorded data
For surveys or informal interviews, where no personal data
are gathered or personal identifiers are removed from the
data:
• obtaining written consent may not be required • an
information sheet should be provided to participants
detailing the nature and scope of the study, the identity
of the researcher(s) and what will happen to data
collected (including any data sharing)
Sample consent forms are available from the UK Data
Archive.27
ONE-OFF OR PROCESS CONSENT?
Discussing and obtaining all forms of consent can be a
oneoff occurrence or an ongoing process.
• One-off consent is simple, practical, avoids repeated
requests to participants, and meets the formal
requirements of most Research Ethics Committees.
However, it may place too much emphasis on ‘ticking
boxes’.
• Process consent is considered throughout the research
project and assures active informed consent from
participants. Consent for participation in research, for
primary data use and for data sharing, can be
considered at different stages of the research. This gives
participants a clearer view of what their participation
means and how their data are to be shared. It may,
however, be repetitive and burdenesome.
RESEARCH ETHICS COMMITTEES AND DATA SHARING
The role of Research Ethics Committees (RECs) is to
help protect thesafety, rights and well-being of research
participants and to promote ethically sound research.
This involves ensuring that research complies with the
Data Protection Act 1998 regarding the use of personal
information collected in research.
In research with people, there can be a perceived
tension between data sharing and data protection where
research data contain personal, sensitive or confidential
information. However, in many cases, data obtained from
people can be shared while upholding both the letter
and the spirit of data protection and research ethics
principles.
RECs can play a role in this by advising researchers that:
• most research data obtained from participants can be
successfully shared without breaching confidentiality
• it is important to distinguish between personal data
collected and research data in general
• data protection laws do not apply to anonymised data
• personal data should not be disclosed, unless consent
has been given for disclosure
• identifiable information may be excluded from data
sharing
• many funders recommend or require data sharing or
data management planning
• even personal sensitive data can be shared if suitable
procedures, precautions and safeguards are followed,
as is done at major data centres
For example, survey and qualitative data held at the UK
Data Archive are typically anonymised, unless specific
consent has been given for personal information to be
included. They are not in the public domain and their
use is regulated for specific purposes after user
registration. Users sign a licence in which they agree to
conditions such as not attempting to identify any
individuals from the data and not sharing data with
unregistered users. For confidential or sensitive data
stricter access regulations may be imposed.
RECs can play a critical role by providing such
information to researchers, at the consent planning
stages, on how to share data ethically.
SHARING CONFIDENTIAL DATA
The Biological Records Centre (BRC)
is the national custodian of data on
the distribution of wildlife in the
British Isles.28 Data are provided by
volunteers, researchers and
organisations. BRC disseminates data for
environmental decision-making, education and research.
Data whose publication could present a significant threat
to a species or habitat (e.g. nesting location of birds of
prey) will be treated as confidential. The BRC provides
access to the data it holds via the National Biodiversity
Network Gateway. Standard access controls are as follows:
• public access to view and download all records at a
minimum 10 km2level of resolution, and at higher
resolution if the data provider agrees
• registered users have access to view and download all
except confidential records at the 1 km2level of
resolution
• conservation organisations have access to view and
download all except confidential records at full
resolution with attributes
• conservation officers in statutory conservation agencies
have access to view and download all records, including
confidential records at full resolution with attributes
• records that have been signified as confidential by a data
provider will not be made available to the conservation
agencies without the consent of the data provider.
CASE
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