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Elif Gokbel

POPULAR ISSUES IN RESEARCH ETHICS AND INTRODUCING APPLE


RESEARCH KIT
Learning goals:
Identify the top three ethical issues from available literature
(such as authorship, duplicate publication, fabrication or
falsification of data, etc.)
Find interview videos that professionals in the research discuss
about at least one of the issues you identify
List the sources you find helpful to overcome ethical problems
Explore how Research Kit of Apple work to collect data online for
medical research studies
Name at least 3 apps that has created on Research Kit and most
commonly used (such as Asthma Health)
Discuss 3 advantages/3 disadvantages of such apps in terms of
research ethics
Ethics is very important when someone is conducting an
experiment. Ethics should be applied on all stages of research, such as
planning, conducting and evaluating a research project. While ethical
rules should be very clear and definite before starting an experiment,
ethical issues commonly arise. Such issues might occur for the
following aspects: Authorship, conflict of interest (COI), dilemma of
ethics, duplicate publication; ethical and legal aspects, fabrication or
falsification of data, finding retracted papers, and image manipulation
(Pierson, 2013). In the first part of the session, regarding related
literature, deciding first authorship, duplicate publication, and
fabrication of data will be addressed as top three ethical concerns in
conducting research. In the second part of the session, I will
introduce Apples Research Kit, three apps (Asthma Health, mPower,
My Heart Counts) most commonly used to collect data, and finally

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discuss three advantages and three disadvantages of such apps in


terms of research ethics.
Deciding first authorship. Authorship is a significant aspect, as it
is associated with recognition for creativity. Deciding the order of
authors on a manuscript is one of the most common problems
occurring in research. An author can be defined as the one who begins
or creates; or the one who starts a plan or an idea. As Bavdekar (2012)
addressed, authorship of a scientific paper indicates, the authors
should be credited with creation of new knowledge, offering new
solutions, or providing novel insights (pg. 76). There are also some
guidelines pointed by Newman and Jones (2006) for multiple authors:
1.Ensuring that whoever writes the first draft gets first authorship. The
order of authorship on the heading should be a shared decision of the
coauthors, 2.Make sure that an agreement is negotiated early, which
provides clarity of roles and plans for papers.
With the link below, I would like to share examples of cases
about dilemmas of authorship and follow-up discussions of experts
about ethical concerns.
http://www.actsi.org/areas/erks/ethics/authorship.html
https://www.youtube.com/watch?
v=I3wEmi1rMeQ&context=C3fcf9e1ADOEgsToPDskI9Sud2m2VX8RDa25094Ro

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Duplicate publication. Duplicate publication is defined as the


publication of an article whose content was considerably similar to that
of a previously published article. Ethical problems caused by duplicate
publication are identified as signed declaration that the article has not
been published previously, aspects concerning copyright (Alfonso,
Bermejo, & Segovia, 2005).
Fabrication of data. The term implies intentionally making up
data or results. In the social sciences, for instance, it occurs when a
researcher completes a questionnaire for a fabricated subject that was
never interviewed or surveyed.
Apples research kit is an open source software framework
designed to let medical researchers create iPhone apps for their
medical and health studies and gather data more frequently. Some
research institutions have recently developed apps with ResearchKit for
studies on asthma, breast cancer, cardiovascular disease, diabetes and
Parkinsons disease. The apps will assist them recruit participants so
that there would be no need for participants going in the lab. Since
having patients is one of the most difficult tasks in a study, this could
be a significant advance to medical research (Duhaime-Ross, 2015).
The software is easy to download and can solve several important
problems with current medical studies: 1) limited participation; 2)
frequent data entry; and 3) data reliability/ difficulties on coding
written data by patients (Diamond, 2015). Regarding the limited

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number of participants in traditional clinical tests, the kit allows


everyone who is eligible for research to participate. The software also
provides patients enter data as often as desired, rather than only at
limited opportunities such as hospital or clinic visits. Last but not least
advantage of the research kit would be that it might limit the range of
data provided by patients rather than having patients to write
immeasurable or invalid values on a data collection paper. The figure
below represents the three most common advantages and
disadvantages of the apps. There are also some concerns about such
applications. Unfortunately, it is easy to provide false background
information, such as age, gender, etc. on the apps. Although Apple
ensures the users that "Apple will not see the data entered", privacy is
still the biggest issue to be re-considered.

Advantages
A grown number of Apple

Disadvantages
Easy to give false information

audience (increasing the sample


size)
Easiness on data coding (instead

Children use without consent from

of collecting written responses by

parents

patients)
Consistent and regular collection

Privacy

of data
Figure 1. Advantages and disadvantages of ResearchKit of Apple

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References
Alfonso, F., Bermejo, J., & Segovia, J. (2005). Duplicate or redundant
publication: can
we afford it?. Revista Espaola de Cardiologa (English
Edition), 58(5), 601-604.
Bavdekar, S. B. (2012). Authorship issues. Lung India: Official Organ of
Indian Chest
Society, 29(1), 7680. http://doi.org/10.4103/0970-2113.92371.
Diamond, D. (2015). Can Apple help cure cancer? Its new ResearchKit
could be the
start?. Retrieved
fromhttp://www.forbes.com/sites/dandiamond/2015/03/09/applenow-wants-to-cure-cancer-and-it-wants-you-to-help/
Duhaime-Ross, A. (2015). Apple's new ResearchKit: 'Ethics quagmire' or
medical
research aid?. Retrieved from
http://www.theverge.com/2015/3/10/8177683/apple-research-kitapp-ethics-medical-research
Newman, A., & Jones, R. (2006). Authorship of research papers: ethical
and
Professional issues for shortterm researchers. Journal of Medical
Ethics, 32(7), 420423. http://doi.org/10.1136/jme.2005.012757
Pierson, C. A. (2012). Ethical and Legal Aspects of Publishing: Avoiding
Plagiarism
And Other Issues. Writing for Publication in Nursing and
Healthcare, 193-208.

Helpful Links for Further info:


http://actsi.org/areas/ethics_reg/ethics/authorship.html
http://www.bath.ac.uk/research/pdf/ethics/ethical-dilemmas.pdf
http://www.utexas.edu/research/rsc/humansubjects/forms/ehtical_dilem
mas_internet.pdf
http://aom.org/About-AOM/Ethics-of-Research---Publishing-VideoSeries.aspx
http://serc.carleton.edu/geoethics/activities/83491.html

Elif Gokbel