Call to share public health research more openly
pharmafile | January 12, 2011 | News story | Research and Development | Bill and Melinda Gates Foundation, Wellcome Trust, data sharing, public health
The only way that pressing needs in global public health can be met is for research to be shared more openly and made widely available.
That is the message in a joint statement published today from 17 international health funding agencies, including the Bill and Melinda Gates Foundation and the UK’s Wellcome Trust.
They have all pledged to work together “to support timely and responsible sharing of data that are collected from populations for the purpose of health research” and want more bodies to join them.
Wellcome director Sir Mark Walport and Paul Brest, president of the US-based Hewlett Foundation, have authored an article in the Lancet outlining how data sharing is not yet the norm within the public health research community.
Such an omission “threatens to limit both the progress of this vital research and its application for health benefit”, they warn.
“This is an urgent problem which needs the support of all researchers and funders and we call on them to join us in making this commitment,” Brest says.
Other signatories include the World Bank, as well as UK bodies the Medical Research Council and Economic and Social Research Council.
There are also groups from France, Germany, Australia, New Zealand and Canada, plus half a dozen US funders.
Increasing access throws up questions about the rights both of researchers and participants, but the funders believe these can be overcome.
“Whilst it is imperative that appropriate safeguards are in place to protect individuals and communities, we already have the tools to ensure research data can be shared safely and securely,” insists Brest.
The statement suggests three principles to underpin access and use of data, making it:
• Equitable, by balancing the needs of researchers who generate and use data, with those of communities and funders who expect health benefits from it
• Ethical, through the protection of individuals’ privacy at the same time as recognising the importance of improving health by using data effectively
• Efficient, which means sharing data in ways that are proportionate, build on existing practice and reduce unnecessary duplication and competition.
“We have a duty to those populations who participate in research to ensure maximum benefit is derived,” concludes Brest. “Funders and researchers can and must do more.”
The signatories’ goals include building capacity and skills to manage and analyse data, particularly in poorer countries.
And researchers will also require incentives to share, while more data infrastructure and technical tools need to be developed to allow this to be achieved safely and securely.
Adam Hill
Related Content
Gene Weaver awarded Gates Foundation grant for programmable gene insertion platform
UK-based biotech Gene Weaver has received $515,000 from the Bill and Melinda Gates Foundation to advance …
FDA warns three Hepatitis C drugs may worsen liver function in some rare cases
The FDA has warned that three Hepatitis C (HCV) drugs made by AbbVie, Gilead and …
Living in polluted city for ten years increases risk of lung disease as much as pack of cigarettes a day for 29 years
Air pollution in cities dramatically increases the risk for and risk of progression of emphysema, …
