Ethics Guidance for Occupational Health Practice 9th Edition - Book - Page 101
5.35. The recruitment process to a study can, of itself, compromise confidentiality. If
inclusion criteria require having a particular health condition, then, by virtue of
volunteering, workers risk this personal information becoming ‘public’
knowledge. Similarly, excluding individuals who do not meet specific criteria
may risk inferring sensitive information. Recruitment notices should therefore
emphasise exclusion rather than inclusion criteria.
5.36. There is an ethical obligation to respect the confidentiality of health records
after death 79 and studies that include deceased workers need to consider this
aspect, although the UK General Data Protection Regulation (UKGDPR) does
not apply to the data of dead people. It is normally considered acceptable to
include deceased workers in a records-based study. However, if the protocol
involves contacting relatives for further information, e.g. a case-control study of
bladder cancer in the dye industry, it would be important to justify the necessity
and to proceed with due sensitivity.
Data security
5.37. Data held for research purposes must be kept just as secure as other
occupational health sensitive personal information (see Chapter 3, Information).
Data proliferation of digitally created and stored files (e.g. transcriptions 3 of
interviews and focus groups on qualitative research) is common during the
course of a research project as programmes progress from data collection
through to analysis and archive and must be planned for 80. Linkage records are
usually destroyed at the end of a study (unless required for later follow-up), but
records of destruction should be kept for audit purposes. Data that is retained,
which may in certain circumstances be for protracted periods, must be stored
under the same secure conditions as when the study was in progress. Recorded
voices, videos and transcriptions thereof are subject to the same data
processing, retention, safety and security as any other data.
3
It is recommended that voice recordings are transcribed and then deleted in order to assist with
maintaining confidentiality.
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