Sharing Research Data to Improve Public Health in Africa A Workshop Summary (2015) / Chapter Skim
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4 Exploring the Ethical Imperative for Data Sharing
4 Exploring the Ethical Imperative for Data Sharing
Pages 37-58
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From page 37... ...
; and professional standards of conduct, or establishing a set of professional ethics for those involved in data sharing, are needed, whether related to collecting data, managing the data in a data center, or managing the sharing of the data itself. Reasons to Share Data Parker suggested arguments in favor of data sharing fall into three categories: (1)
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From page 38... ...
Parker opined that sharing data, if done appropriately, can help to address health inequalities, and therefore creates an obligation to participants who have consented to use the data well and efficiently. He also pointed out ethical implications of not using data, raising the question of whether it is more problematic to use samples where the consent is a bit unclear, for example, archive samples, or using additional resources to collect new samples from new participants.
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From page 39... ...
to qualitative research to development of models for data sharing to understanding the benefits of data sharing. Research, he said, could be conducted on questions relating to valid consent, respect, and autonomy; social justice; what it means for research collaborations to be fair; and requirements for public trust and confidence in the scientific enterprise.
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From page 40... ...
Researchers and participants in low-income settings should be able to be confident that broad social justice considerations are also being taken seriously, in his opinion. They should be able to expect that research funders and research institutes are attempting to address global inequalities, that research is socially relevant, and that it is addressing the socalled "10:90 gap" -- the view that 10 percent of worldwide resources devoted to health research are put toward health in developing countries,
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From page 41... ...
In interviews he has conducted with scientists in Africa and Southeast Asia, capacity building, fairness and respect, and an opportunity to set scientific agendas and operate at the cutting edge of science are high on their list of requirements for fair collaboration. He suggested an opportunity to develop an evidence base on the difference between good and bad collaborations by developing "high-quality research looking at different ways of managing data sharing." Data Ownership A participant raised a question about data ownership, conveying that he views the researcher as the collector and custodian of the data, but not the owner.
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From page 42... ...
Ethics committees have an important role to play, he said, but are often less than perfect and do not have adequate resources or training, perhaps especially related to data sharing. Consideration of ethics needs to continue beyond approval by a committee, because "many of the most interesting and challenging ethical issues arise after you've got the ethics approval." STAKEHOLDER PERSPECTIVES ON DATA SHARING IN LOW- AND MIDDLE-INCOME COUNTRIES: FINDINGS OF A MULTISITE STUDY Susan Bull, senior researcher in international health research ethics and head of Global Health Reviewers, was the first of several presenters discussing the findings of a multisite study funded by the Wellcome Trust.
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Why? What standards might be used to prioritize sharing data?
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Denny presented some main findings from the first paper that came out of the project. He reported a mixed level of awareness among their participants of the procedures and policies or issues related to sharing data, but a general consensus that sharing individual-level data at both the local and international level is for the greater good.
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From page 45... ...
The study did not involve any research ethic board members, but participants saw a potential role for these boards in resolving conflict between parties and protecting the interests of research participants. Based on their interviews and focus groups, the researchers suggested that ways to facilitate data sharing include alignment of stakeholder interests, funder support for the required infrastructure, a culture of learning from prior examples (e.g., a resource guide)
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From page 46... ...
For researchers, promotion of interests involved promoting local scientific capacity building, with high value placed on doing this within scientific collaborations. Autonomy and Consent Prior individual awareness and agreement were seen as very important to sharing data.
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From page 47... ...
The project did not include interviews with research participants because the ethics committees in Thailand thought the participants were too vulnerable and would be harmed by asking their views on data sharing. In this site, although participants were generally in favor of data sharing, there was a very broad lack of experience, even among senior researchers, of sharing data outside research collaborations.
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From page 48... ...
They collect empirical health service intervention data. Like other sites, this study found that participants were generally in favor of data sharing, but most had very limited experience, and it was difficult to find participants with an experience outside of collaborations.
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. Sweat, skepticism and uncharted territory: A qualitative Figure 3-2, fixed image study of opinions on data sharing among public health researchers and research participants in Mumbai, India.
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Bull noted at this site, research participants and junior researchers were most uncomfortable being asked about their opinions. Because there is not a clear national framework and policy environment for these decisions to be made, asking someone to venture an opinion is considered disrespectful.
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Developing Resources to Assist in Policies and Practices Bull said the findings from the project will be published in a special issue of the Journal of Empirical Research and Health Research Ethics in July 2015. The project also expects to publish additional papers.
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Senior researchers had knowledge and experience through work in collaborations. For junior researchers and community stakeholders, the study used hypothetical vignettes to depict the process of data sharing to elicit views.
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One finding that came from this research was a distinction made in people's minds between researchers doing research in the public interest or having public benefit in an institutional setting, universities, and research institutes versus research done by commercial organizations where there would be profit gained from the data that people contribute. Commercial Gain A participant posed a question of whether it mattered if the research were viewed for commercial gain, an important aspect of public health research.
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From page 54... ...
The premise of the project was that people would be worried about the samples going to the North, but the researcher found they worried more about the samples going to other institutions in their own country or to other African countries. A presenter said the junior researchers and community stakeholders were not necessarily against exportation of data but wanted to know how the local community would gain from the data export.
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From page 55... ...
The ideas posed by the groups are listed below. Capacity Building Breakout group participants suggested the following ideas related to best practices in capacity building: • Include data sharing as part of the research cycle itself; that is, embed data sharing from proposal development through other stages of research.
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From page 56... ...
• Recognize historical issues that may make trust difficult for some researchers, including the post-colonial approaches to research with a North-South divide. Further Research and Evaluation Breakout group participants suggested the following ideas related to further research and evaluation: • Do a meta-review of data-sharing policies to generate a standard set of templates for ways that people could organize data-sharing policies in various settings.
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From page 57... ...
Policies and Processes for Ethical Data Sharing Breakout group participants suggested the following ideas related to policies and practices: • As part of the engagement and consent process, consider how much information needs to be provided; for example, how much information is needed if requesting broad consent. • Develop policies on what and how often to provide feedback to communities from which the research data came, with the goal of frequent feedback to support engagement.
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From page 58... ...
He also suggested development of a code of conduct or professional guidelines for researchers similar to the code of conduct for doctors that would say "something about not only the kind of things you should do but what kind of person you should be." Bull noted most of the breakout groups focused on trust and confidence, and capacity building for institutional review boards and research ethics committees was a new and recurrent theme with practical implications. She also noted community engagement was consistently mentioned as a needed component of developing trust and confidence and of capacity building, as well as an area where policies and processes are needed.
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