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Code of conduct on data sharing

Source: TropIKA.net editorial team

Title of presentation: Code of conduct on data sharing

Date: 18 Nov 2008

Location: Marhaba room, Azalai Hotel

Chair: Mark Walport, Director, The Wellcome Trust, UK

Panelists:

• Timothy Evans, Assistant Director-General, Information, Evidence and Research, WHO, Geneva
• Frank Nyonator, Health Systems Specialist, WHO country office, Abuja, Nigeria
• Jimmy Whitworth, Head, International Activities Science Funding, The Wellcome Trust, UK

Presenter: Elisabeth Pisani, Consultant, The Wellcome Trust, UK

Official rapporteur: Kathryn GRACZYK, Technical Officer, Health Metrics Network, WHO, Geneva

Major topics: Joint proposal by The Wellcome Trust and WHO for a Code of Conduct on Data Sharing regarding research on human health

Scope: Health, research data; data, collaboration and sharing; data sharing, technical issues; health data, legal and ethical issues; north/south, equitable partnerships; regional, global.

Context

Mark Walport, Chair, stressed the timeliness of the debate on a complex and far reaching set of issues. The diversity of the membership within this global Bamako Forum is both an asset and a challenge. Current technology allows for intense interaction, accelerated exchange of information and considerable output of data to be processed. Applications to health research, cutting across so many issues and disciplines, increases complexity. However, pooling of resources and experience, synergies both within the Forum and through internet-mediated collaborations can increase scope of data reviewed and breadth and depth of analysis;

The cost of data collection, processing and dissemination is high. Worldwide there is a formidable amount of data generated and collected – be it epidemiological data, genetic data, etc. Hence the need to embark on a systematic approach for data sharing that can result in optimizing the use of this data based on ethics and a code of conduct.

Data sharing is well established in a number of scientific areas such as astrophysics. The situation has been different regarding data related to human health. However, there is a need to move forward and introduce new ways of thinking and new practices to open up access to data, information and knowledge to the greatest number.

New ideas, Progress, Obstacles

Within this context, Elisabeth Pisani presented the concept and approach underpinning the proposed Code of Conduct on Data Sharing. The rationale includes the need to maximize data sharing and optimize the use of such data as may be collected in the course of activities ranging from epidemiology to biology, genetics, routine surveillance programmes, etc. It also aims at absorbing the growing costs involved in data collection and processing per se, as well as in the purchase of expensive related technology. Epidemiologists pioneered data sharing and their experiences illustrate what can be achieved by pooling resources and research findings.

Obstacles to the free flow of data include

• concerns with privacy; and
• concerns with ownership of data.

The sense of loss of control over one’s personal data, as well as the unease at seeing data being exported elsewhere are the sources of much misunderstanding and tension, between the public and researchers, as well as among researchers themselves.

As argued during the session, the interests of the public must prevail over those of the researchers. At the same time, there must be stringent safeguards to protect the privacy of individual human subjects enrolled in a research protocol. The data must be anonymized through encoding and the confidentiality of the records strictly preserved.

Potential benefits: Research will benefit society through improved opportunities for (i) research grants and fellowships, (ii) funding for research activities and institutions, (iii) research related job creation. The development of codes of conduct, ethics and good practices can be reflected in the emergence of ethics offices, ombudsman, etc.

Risks may involve violation of individuals’ or communities’ privacy, affecting an individual’s perception of self, disturbing his/her relations with family and entourage; consequences might include the stigmatization of small groups (e.g. those practicing endogamy and having developed specific genetic traits), or the feeling on the part of communities that they have been dispossessed, and/or are being labelled and identified merely as sources of data which henceforth are no longer under their own control.

The Way Forward

The potential for effective and efficient data sharing is based on:

• Compatibility of data and transferability on the internet, to ensure access, processing and use of data once analyzed;
• Critical ethical and peer review of data and analysis, provided the bodies carrying out the reviews are independent;
• Data sharing implies that the original data retains its original identity and distinct status, while being accessible to others.

Discussions

There was a variety of viewpoints. No unanimity. Some supported the principle of data sharing while others objected to the potential opening up of databases and sharing of data among researchers and institutions.

Those against data sharing were a minority but argued vigorously that the financial, political, technological, institutional imbalances were such that the south (poorer) would lose out to the north (richer/stronger). Their fear was that (i) should ministers be presented with such a policy and code of conduct, and should they give it their blessing in principle, their next step might well be to impose it on researchers and research institutions without looking further into actual implications; (ii) researchers in the south would be even more vulnerable, deprived as they are of access to funding, scientific infrastructure, technology, publications, etc. These issues were raised and discussed.

Those in favour of data sharing, such as the official in charge of the INDEPTH Network in Ghana had a chance to elaborate on their own experience within the Wellcome Trust partnership. They explained how their original skepticism dissipated and how their concerns about the risk of violation of intellectual property rights were allayed in the course of actual collaboration. At the same time they were given the means to access and exploit fully (and disseminate as well) the huge amount of data they had generated over time but had difficulties processing and analyzing using solely their finite capacities.

Still other participants voiced the view that a new mindset and a new foundation for collaborative work should emerge, where researchers from the south can free themselves from the fear of being overpowered by the north. They felt there was an emotional and psychological blockage that should be overcome to build up self-confidence and enable a more equalitarian and matter-of-fact type of relationship.

Policy aspects - Recommendations

• Reinforce ethical principles and guidelines for best practices regarding data collection and sharing
• Further strengthen practical arrangements and safeguards to ensure that data is anonymized and kept confidential
• Promote good practices, guidelines and training to ensure that data is collected only on the basis of free and informed consent
• Harmonize norms and standards, for data and procedures, to enable easy access and exchange through compatibility of data and systems
• Foster equitable and transparent access to data.

Personal observations from TropIKA rapporteur

The draft code of conduct on data sharing should have been made available to researchers and research institutions much earlier, not just at the session of the Forum;

There was no case study to rely on, to see how the code of conduct might operate in real life settings and what lessons could be derived from that;

The Code of Conduct, in English, is inaccessible to francophone researchers.

Using other frameworks and approaches, many joint north-south research teams have been practicing data sharing for a long time, and successfully so. Their research protocols are reviewed by dedicated ethics research review committees, as is the case in Mali for malaria research.

Data sharing and a concerted effort to jointly define and agree to a code of conduct can help put in place the building blocks or units that are required to collect and analyze the numerous data gathered but still left dormant in so many African research institutions.

Platforms such as that provided by TropIKA.net can play an invaluable role in this regard, for researchers and students – from both north and south.

Relevant documents

Draft Code of Conduct

INDEPTH network

Partnerships and experiences involving data sharing

Malaria Research Training Centre, Mali

Kintampo Health Research Centre, Ghana

Ifakara IHRDC – Tanzania

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