Data sharing is increasingly mandated by health research funders and publishers. In the context of data collected in low-resource settings, concerns have been raised regarding inequitable opportunities to engage in secondary use of data between researchers in well-resourced and resource-limited settings. In this context, we present three case studies and their issues related to equity: the multicountry Antenatal Corticosteroid Trial, health research in the Dominican Repulic and the WorldWide Antimalarial Resistance Network. These case studies were discussed at the 2018 Global Forum for Bioethics in Research in South Africa, focussing on the theme “The ethics of data sharing and biobanking in health research”. The case studies provide concrete examples of real challenges such as lack of prior consent for data sharing, potential for misinterpretation of data by secondary users and limited capacity of researchers in low-resource settings to conduct secondary analyses. We conclude by suggesting ways forward. We stress the importance of capacity building and investments in data management and data science skills, and in data sharing platforms supporting poverty-related disease research. In addition, we recommend that there should be incentives to promote data sharing and that research groups and institutions establish their own data sharing policies tailored to their context, data and community while persuing harmonization with existing policies as much as possible. We also think that international guidelines on authorship criteria should be revisited. For new studies, researchers should obtain consent for sharing of participants’ data with secondary users. Lastly we recommend that community and stakeholder engagement be conducted to improve the consent process and identify what might be sensitive data to mitigate any potential harms to data subjects and their communities.
BackgroundThe establishment of international collaborative research partnerships in times of infectious disease outbreaks of international importance has been considered an ethical imperative. Frail health research systems in low- and middle-income countries can be an obstacle to achieve the goal of knowledge generation and the search for health equity before, during and after infectious disease outbreaks.MethodsA qualitative case study was conducted to identify the challenges and opportunities facing the Dominican Republic with regards to developing international collaborative research partnerships in the context of the Zika outbreak and its ethical implications. Researchers conducted 34 interviews (n = 30 individual; n = 4 group) with 39 participants (n = 23 males; n = 16 females) representing the government, universities, international donor agencies, non-governmental organisations, community-based organisations and medical societies, in two metropolitan cities.ResultsFive international collaborative research projects related to the Zika virus were identified. Major ethical challenges were linked to the governance of health research, training of human resources, the institutionalisation of scientific activity, access to research funds and cultural aspects. Capacity-building was not necessarily a component of some partnership agreements. With few exceptions, local researchers were merely participating in data collection and less on defining the problem. Opportunities for collaborative work included the possibility of participation in international research consortiums through calls for proposals.ConclusionsThe Dominican government and research stakeholders can contribute to the international response to the Zika virus through active participation in international collaborative research partnerships; however, public recognition of the need to embrace health research as part of public policy efforts is warranted. A working group led by the government and formed by national and international research stakeholders will be key to identify ways in which the country could respond to the ethical demand of generating new knowledge in times of outbreaks.
The global health emergency due to COVID‐19 is a disruptive event that has had various effects on mental health. Given this emergency, the Dominican Republic intervened to mitigate the negative impact of the pandemic, considering the physical isolation decreed in the country. In this context, the Autonomous University of Santo Domingo and the School of Psychology designed the UASD COVID‐19 Psychological Helpline . The objective of this article is to describe the development, implementation and evaluation of a programme of psychological first aid. The programme aimed to attenuate the impact of morbidity and mortality due to mental health issues associated with the COVID‐19 pandemic through mobile technology. There were 62 psychologists involved and trained to provide care, and a protocol was developed, implemented, monitored and evaluated. Over the course of four months, the programme assisted 497 people. The average age of the participants was 32 years, and 73% were women. The reasons for contacting the helpline included anxiety, stress, depression, domestic violence, suicidal behaviours and other behavioural problems. Following the intervention, most users reported feeling satisfied and having improved emotions. The first psychological aid in the country developed through telephone and chat messaging was an optimal resource since face‐to‐face interaction was not possible. It also reached more people and reduced the attention gap.
Background Good governance and regulatory supervision are required to conduct research in an international public health emergency context and to ensure compliance with ethical standards. The “Strengthening research ethics governance and regulatory oversight in Central America and the Dominican Republic in response to the COVID-19 pandemic” study is a regional effort in which research ethics stakeholders participated in addressing research ethics governance and preparedness response challenges to the COVID-19 pandemic in Central America and the Dominican Republic. Methods A qualitative action research study was conducted following a participatory approach. Research ethics stakeholders in Central America and the Dominican Republic were mapped; a regional webinar and three virtual workshops were conducted discussing research ethics governance, ethics review and collaborative research practice during the pandemic. A roundtable session presented results and obtained feedback on a draft of a policy to strengthen regional research ethics governance. Results Countries across Central America and the Dominican Republic are at different stages in their development of research ethics systems. Countries with more established systems before COVID-19 were better organized and prepared to respond. This finding argues against improvisation and supports further work on strengthening governance of research ethics systems. Community engagement in research ethics public policy-making is practically absent in the region. Research and research ethics collaboration schemes are lacking amongst the countries; however, there are incipient initiatives in the region, such as the Central America and Caribbean Network of Research Ethics Committees. A policy brief with recommendations on how to advance towards strengthening the governance of research ethics systems was prepared and submitted to the Central American Integration System for analysis and possible approval. Conclusion National research ethics systems in Central America and the Dominican Republic were unprepared to respond to the COVID-19 pandemic with respect to research oversight and effective collaboration. In most cases, national research ethics systems were found to be weak, and regional research collaboration was practically absent. To promote collaboration, a joint strategy needs to be developed with a regional vision towards sharing knowledge and best practices.
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