Ethical Considerations Related to Mobile Technology Use in Medical Research

Parker, Melissa

doi:10.7309/jmtm.23

Cited by 8 publications

(7 citation statements)

References 13 publications

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“…For consent to be truly informed, it is imperative that participants understand the information disclosed to them before making a voluntary decision for or against participation. Cases have been documented where MPS protocols have been rejected by RECs because of the perception that there will not be sufficient opportunity for participants to comprehend survey disclosure information (22). With a remote investigator, it may be practically difficult to assess comprehension and voluntary choice (22).…”

Section: Discussionmentioning

confidence: 99%

“…Cases have been documented where MPS protocols have been rejected by RECs because of the perception that there will not be sufficient opportunity for participants to comprehend survey disclosure information (22). With a remote investigator, it may be practically difficult to assess comprehension and voluntary choice (22). To mitigate these challenges, interviewees suggested that potential MPS respondents should be contacted prior to the actual survey either by text messaging or voice call to provide them with relevant information about the survey and give them time to understand.…”

Section: Discussionmentioning

confidence: 99%

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Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda

Mwaka¹,

Nakigudde²,

Ali³

et al. 2019

mHealth

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Background: Lack of data for timely decision-making around the prevention and control of noncommunicable diseases (NCDs) presents special challenges for policy makers, especially in resource-limited settings. New data collection methods, including pre-recorded Interactive Voice Response (IVR) phone surveys, are being developed to support rapid compilation of population-level disease risk factor information in such settings. We aimed to identify information that could be used to optimize consent approaches for future mobile phone surveys (MPS) employed in Uganda and, possibly, similar contexts. Methods:We conducted an in-depth qualitative study with key stakeholders in Uganda about consent approaches, and potential challenges, for pre-recorded IVR NCD risk factor surveys. Semi-structured interviews were conducted with 14 key informants. A contextualized thematic approach was used to interpret the results supported by representative quotes.Results: Several potential challenges in designing consent approaches for MPS were identified, including low literacy and the lack of appropriate ways of assessing comprehension and documenting consent.Communication with potential respondents prior to the MPS and providing options for callbacks were suggested as possible strategies for improving comprehension within the consent process. "Opt-in" forms of authorization were preferred over "opt-out". There was particular concern about data security and confidentiality and how matters relating to this would be communicated to MPS respondents. Conclusions:These local insights provide important information to support optimization of consent for MPS, whose use is increasing globally to advance public health surveillance and research in constructive ways.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda

Mwaka¹,

Nakigudde²,

Ali³

et al. 2019

mHealth

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“…Although there may be patients and participants sitting on these committees as representatives, decisions are made on behalf of research participants by experts. The end result of this piece-meal decision-making is that it may not be in accordance with what individuals, groups, and communities want in terms of international data sharing [ 11 ]. While in many regions of the world such as sub-Saharan Africa, mechanisms have been developed to engage communities and obtain their consent before research implementation [ 12 , 13 ], such mechanisms are not broadly adopted in western countries or other countries with advanced biomedical research.…”

Section: Flaws Of the Current Data-sharing Governance Frameworkmentioning

confidence: 99%

Including all voices in international data-sharing governance

et al. 2018

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BackgroundGovernments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world.Main textThe governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decision-making. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation.ConclusionsWe recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.

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“…The question of how to properly explain and obtain agreement to collect data using mobile technology has been raised in previous literature and is a potential challenge for MPS conducted in low-resource settings [ 11 , 26 ]. Here, we refer to a combination of basic disclosure and voluntary agreement as “consent” and distinguish it from a theoretical notion of “informed consent” which typically requires in-depth explanation of the data collection activity and understanding on the part of respondents before voluntary agreement.…”

Section: During Data Collectionmentioning

confidence: 99%

Ethics Considerations in Global Mobile Phone-Based Surveys of Noncommunicable Diseases: A Conceptual Exploration

Ali¹,

Labrique²,

Gionfriddo³

et al. 2017

J Med Internet Res

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Mobile phone coverage has grown, particularly within low- and middle-income countries (LMICs), presenting an opportunity to augment routine health surveillance programs. Several LMICs and global health partners are seeking opportunities to launch basic mobile phone–based surveys of noncommunicable diseases (NCDs). The increasing use of such technology in LMICs brings forth a cluster of ethical challenges; however, much of the existing literature regarding the ethics of mobile or digital health focuses on the use of technologies in high-income countries and does not consider directly the specific ethical issues associated with the conduct of mobile phone surveys (MPS) for NCD risk factor surveillance in LMICs. In this paper, we explore conceptually several of the central ethics issues in this domain, which mainly track the three phases of the MPS process: predata collection, during data collection, and postdata collection. These include identifying the nature of the activity; stakeholder engagement; appropriate design; anticipating and managing potential harms and benefits; consent; reaching intended respondents; data ownership, access and use; and ensuring LMIC sustainability. We call for future work to develop an ethics framework and guidance for the use of mobile phones for disease surveillance globally.

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Ethical Considerations Related to Mobile Technology Use in Medical Research

Cited by 8 publications

References 13 publications

Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda

Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda

Including all voices in international data-sharing governance

Ethics Considerations in Global Mobile Phone-Based Surveys of Noncommunicable Diseases: A Conceptual Exploration

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