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New Resource Seeks to Help Collaborative Research Projects Adhere to Data Access, Sharing Polices


Canada's Public Population Project in Genomics and Society, P3G, along with the Center for Genomics and Policy at McGill University and the Genome Quebec Innovation Center have launched a non-profit service to help national and international collaborative research projects meet policy requirements for sharing genomic and clinical data.

The group's describe the International Policy, Interoperability, and Data Access Clearinghouse, or IPAC, as a “one-stop” screening service for policy interoperability and access authorization. IPAC services will include providing customers with consent forms, confidentiality contracts, material transfer agreements, and patient information pamphlets that respect the laws and regulations established by the countries represented in the research project, Bartha Maria Knoppers, P3G's co-founder and CGP's director, told BioInform

Other services include helping clients set up information access control mechanisms and security plans to ensure that research data is secure and accessed only with proper authorization. Also offered are ethics consultations, reviews of proposed policies and procedures, and support for efforts to obtain approvals from research ethics board..

IPAC is a new initiative for P3G, and its launch marks the start of a second round of activities for the organization. Incorporated in 2003, P3G is an international non-profit organization that supports collaborative projects. Its initial focus was on harmonizing samples and data stored in international biobanks and making those available for studies exploring genetic and environmental contributions to health and disease.

It offers two membership options for institutions and individuals, who agree to adhere to a charter of principles that underpin its activities. While individual members don't pay any fees, institutional members are charged annual dues of C$800 (US$775) or they can pay C$2,000 (US$1900), which covers their dues for three years. Membership confers benefits such as invitations to participate in its activities and member meetings, access to networking activities with researchers in the field of population genomics, as well as access to customized biobanking tools. Current member institutions include Kaiser Permanente, the UK Biobank, the Ontario Health Study, and the Center for Integrated Genomic Medical Research.

After being funded in 2007 by Genome Canada, Genome Quebec, and the Canadian Institutes of Health Research, P3G focused on helping research groups build large population cohorts offering biobanking-related services such as tutorials and information sessions, a discussion and information exchange platform called "the hub" for researchers involved in biobanking projects, and a toolkit that provided resources around accessing and using data in these environments.

However, starting this year and continuing until 2018, the group is using its expertise to provide research projects with tools to access and use data in genomic research and clinical databases. The IPAC's launch "is an important part of this phase" and is a "logical extension" of the organization's current activities, Knoppers said.

According to P3G's website, IPAC's services will meet the needs of six domains: regenerative medicine; gene therapies; cancer; pediatrics; rare diseases; and bioethics/law. It will address issues such as biobanking, consent, data and sample access, commercialization, confidentiality/privacy, research ethics, the use of samples and data from deceased persons, and governance. Customers do not have to be members to access these services, which are available in English, French, Spanish, Arabic, and Mandarin.

Pricing will vary depending on the particular project's requirements. IPAC is adopting a cost recovery model which means that customer fees will cover the cost of creating the resources they use, Knoppers explained. "We have to figure out what tools would [need to be built from] scratch … and which ones [are] a matter of adaptation and customization" and then "we will be preparing fee schedules" based on that, she said.

It's also making generic versions of some documents such as consent forms available up front in order to gauge the market demand for the sort of services its offering and "adjust ourselves accordingly," she said.

Finally, P3G is seeking funds to sustain the IPAC's activities so that at least during this startup phase so that its survival is not dependent on a steady stream of clients.

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