Governance policies for data sharing on neurodisabilities need to be improved

July 20, 2015

NeuroDevNet researchers from the Network's neuroethics and neuroinformatics core groups have issued a collective call for improved consistency, depth and accessibility of governance and policies on data sharing in relation to vulnerable young populations.

In "Sharing with More Caring: Coordinating and Improving the Ethical Governance of Data and Biomaterials Obtained from Children," a research article published in July 2015 in PLOS One, Drs. Judy Illes, co-lead of NeuroDevNet's neuroethics group, and Elodie Portales Casamar, previous manager of NeuroDevNet's neuroformatics group, and collaborators Holly Longstaff and Vera Khramova, examined ethics and governance information on websites of databases involving neurodevelopmental disorders to determine the availability of information on key factors crucial for comprehension of, and trust and participation in increasingly common initiatives such as biorepositories.

Collection of data and biological samples such as blood are key elements in increasingly complex research programs that incorporate genomics and brain imaging in their investigations of neurodevelopmental disabilities. It was important to conduct a collaborative study examining policies around information sharing, according to Dr. Illes, as it was long overdue.

"Online sites about biobanks for information and biologics about children have been around for years," she said. "Still there is no time like the present to make important adjustments to improve the protection of children, promote their health, and foster excellence in research that has all aspects of ethics underlying it. With the big data sharing initiative taken on last year, led by the neuroinformatics core, this study was even more essential than before."

The researchers identified databases identified using online keyword searches, and assessed information and data sharing policies. Sixteen websites from data sharing organizations met the researchers' criteria. They found that information about types of data and tissues stored, data access requirements and procedures, and protections for confidentiality were significantly addressed by 16 organizations, but there were significant omissions in disclosure in the following areas:

  • special considerations for minors (absent from 63%)
  • controls to check if data and tissues are being submitted (absent from 81%)
  • disaster recovery plans (absent from 81%)
  • discussions of incidental (unanticipated, potentially significant unrelated) findings (absent from 88%)
When present, content pertaining to special considerations for youth, along with other ethics guidelines and requirements, were scattered throughout the websites or available only from associated documents accessed through live links, according to the researchers.

Basic and clinical research can benefit greatly from the large scale sharing of data. However, to foster this effort, stakeholders must be satisfied that data sharing practices are ethically constructed and accountable to donor communities, the researchers contend. "This entails establishing additional safeguard and procedures for the protection of research participants that are particularly vulnerable to breaches of confidentiality, stigmatization, or other adverse consequences of data sharing. In this regard, some types of data must be handled differently to reduce the risk of harm to donors," they wrote.
Illes and her coauthors emphasize that children and families participating in neurodevelopmental research "may have a unique set of concerns and perspectives that could be used to inform gaps in these substantive ethical areas." Incorporating patient and community perspectives into data sharing policies will foster bothy ethical governance and public trust in their organization by ensuring respect for donors and the communities they represent.


The authors conclude by suggesting data sharing organizations integrate information in the following areas to help ensure protection of participants in their research:

  • Storage of data and tissue
  • Accessibility
  • Requirements for permission to access data and tissues
  • Confidentiality
  • Consent/assent guidelines
  • Benefit sharing
  • Commercialization
  • Special considerations for minors
  • Management of incidental findings

"With minimal costs," they observe, "organizations could succinctly summarize information concerning these themes in the publicly accessible areas of their websites and in the process enhance recruitment efforts while also informing individuals of the ethics issues relevant to research participation."

PDF of "Sharing and Caring"