Informed Consent for Secondary Data Analysis

Dadan Mulyana Kosasih

M1820006
Department of Public Health
2020-2021 Medical Philosophy and Ethics Seminar

Defining research data is challenging There is no consensus on the definition of

research data, It varies according to discipline and It varies according to the research
funder1. Research data is any information that has been collected, observed, generated or
created to validate original research findings. Although usually digital, research data also
includes non-digital formats such as laboratory notebooks and diaries 2.
Many people think of data-driven research as something that primarily happens in
the sciences. It is often thought of as involving a spreadsheet filled with numbers. Both
beliefs are incorrect. Research data are collected and used in scholarship across all
academic disciplines and, while it can consist of numbers in a spreadsheet, it also takes
many different formats, including videos, images, artifacts, and diaries 3. Primary data
is data that is collected by a researcher from first-hand sources, using methods like surveys,
interviews, or experiments. It is collected with the research project in mind, directly from
primary sources. Secondary data is data gathered from studies, surveys, or experiments that
have been run by other people or for other research. Typically, a researcher will begin a
project by working with secondary data4.
The goal of research in social science is to gain a better understanding of the world
and how well theoretical predictions match empirical realities 5. Secondary data analysis
contributes to these objectives through the application of “creative analytical techniques to
data that have been amassed by others”6.
Concerns about the secondary use of data mostly revolve around potential harm to
individual subjects and the issue of return for consent. Secondary data vary in terms of the
amount of identifying information in it. If the data has no identifying information or is
completely devoid of such information or is appropriately coded so that the researcher does
not have access to the codes, then it does not require a full review by the ethical board. The
board just needs to confirm that the data is anonymous. However, if the data contains
identifying information on participants or information that could be linked to identify
participants, a complete review of the proposal will then be made by the board. The
researcher will then have to explain why it is unavoidable to have to identify information to
answer the research question and must also indicate how participants’ privacy and the
confidentiality of the data will be protected. If the above said concerns are satisfactorily
addressed, the researcher can then request for a waiver of consent.
If the data is freely available on the Internet, books, or another public forum,
permission for further use and analysis is implied. However, the ownership of the original
data must be acknowledged. If the research is part of another research project and the data
is not freely available, except for the original research team, explicit, written permission for
the use of the data must be obtained from the research team and included in the application
for ethical clearance.
However, there are certainly other issues about the data that is procured for
secondary analysis. The data obtained should be adequate, relevant but not excessive. In
secondary data analysis, the original data was not collected to answer the present research
question. Thus, the data should be evaluated for certain criteria such as the methodology of
data collection, accuracy, the period of data collection, the purpose for which it was
collected, and the content of the data. It shall be kept for no longer than is necessary for that
purpose. It must be kept safe from unauthorized access, accidental loss, or destruction. Data
in the form of hard copies should be kept in safely locked cabinets whereas softcopies
should be kept as encrypted files in computers. It is the responsibility of the researcher
conducting the secondary analysis to ensure that further analysis of the data conducted is
appropriate. In some cases, there is a provision for analysis of secondary data in the original
consent form with the condition that the secondary study is approved by the ethics review
committee 7. According to the British Sociological Association’s Statement of Ethical
Practice (2004), the researchers must inform participants regarding the use of data and
obtain consent for the future use of the material as well. However, it also says that consent
is not a once-and-for-all event but is subject to renegotiation over time 8. It appears that
there are no guidelines about the specific conditions that require further consent.
Use of secondary data is in itself, a highly ethical practice: it maximizes the value of
any (public) investment in data collection, it reduces the burden on respondents, it ensures
replicability of study findings and therefore, greater transparency of research procedures
and integrity of research work. But the value of secondary data is only fully realized if these
benefits outweigh the risks, notably in terms of re-identification of
individuals and disclosure of sensitive information . For this to happen, the use of
9

secondary data must meet some key ethical conditions: (1) Data must be de-
identified before releasing to the researcher; (2) Consent of study subjects can be
reasonably presumed; (3) Outcomes of the analysis must not allow re-
identifying participants; (4) Use of the data must not result in any damage or distress

References
1. University of Leicester. What is research data.
https://www2.le.ac.uk/services/research-data/old-2019-12-11/rdm/what-is-rdm/
research-data.
2. University of Leeds. What is research data? Research data management explained.
https://library.leeds.ac.uk/info/14062/research_data_management/61/
research_data_management_explained.
3. Macalester College. Defining Research Data - Data Module #1: What is Research
Data? - All Guides at Macalester College. https://libguides.macalester.edu/data1.
4. Glen S. Primary Data & Secondary Data: Definition & Example. In
StatisticsHowTo.com : Elementary Statistics for the rest of us! 2018
https://www.statisticshowto.com/primary-data-secondary/
5. Donnellan MB, Lucas RE. Secondary Data Analysis. In: Todd DL (eds) The Oxford
Handbook of Quantitative Methods in Psychology: Vol. 2: Statistical Analysis.
Oxford University Press, 2013. doi:10.1093/oxfordhb/9780199934898.013.0028.
6. Kiecolt KJ, Nathan LE. Secondary Analysis of Survey Data. Secondary Analysis of
Survey Data. SAGE Publications, Inc., 1985. doi:10.4135/9781412985796.
7. Tripathy JP. Secondary data analysis: Ethical issues and challenges. Iranian Journal
of Public Health 2013; 42: 1478–1479.
8. Statement of Ethical Practice For The British Sociological Association 2004. British
Sociological Association. 2004.
https://www.york.ac.uk/media/abouttheuniversity/governanceandmanagement/
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%20practice.pdf
9. Paulo T. Research ethics in secondary data: what issues? In Data Big and Small.
2015 https://databigandsmall.com/2015/10/18/research-ethics-in-secondary-data-
what-issues/
References
1. What is research data — University of Leicester.
https://www2.le.ac.uk/services/research-data/old-2019-12-11/rdm/what-is-rdm/
research-data.
2. What is research data? | Research data management explained | Library | University
of Leeds. https://library.leeds.ac.uk/info/14062/research_data_management/61/
research_data_management_explained.
3. Defining Research Data - Data Module #1: What is Research Data? - All Guides at
Macalester College. https://libguides.macalester.edu/data1.
4. Primary Data & Secondary Data: Definition & Example - Statistics How To.
https://www.statisticshowto.com/primary-data-secondary/.
5. Donnellan, M. B. & Lucas, R. E. Secondary Data Analysis. (Oxford University
Press, 2013). doi:10.1093/oxfordhb/9780199934898.013.0028.
6. Kiecolt, K. & Nathan, L. Sage University Paper series on Quantitative Applications
in the Social Sciences, No. 53. Secondary Analysis of Survey Data (SAGE
Publications, Inc., 1985). doi:10.4135/9781412985796.
7. Tripathy, J. P. Secondary data analysis: Ethical issues and challenges. Iranian
Journal of Public Health vol. 42 1478–1479 (2013).
8. Statement of Ethical Practice For The British Sociological Association. (2004).
9. Research ethics in secondary data: what issues? – Data Big and Small.
https://databigandsmall.com/2015/10/18/research-ethics-in-secondary-data-what-
issues/.