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SACGHS Looks at Genomic Data Sharing

By a GenomeWeb staff reporter

NEW YORK (GenomeWeb News) – How large amounts of genomic data from individuals and groups can be shared among researchers while steering clear of ethical and legal problems will be in the crosshairs of a new task force to be started by the Secretary's Advisory Committee on Genetics, Health, and Society.

At its second 2010 meeting on Wednesday, SACGHS decided that it will consider issues surrounding how genomic data is being shared among the research community in a de-identified manner, and how that may cause problems for particular groups, individuals, or researchers.

SACGHS last fall set up a steering group on genomic data sharing, and in February of this year heard presentations about the various methods of data sharing that are currently in use.

The steering committee has identified three types of issues that may come up: the potential for groups to be harmed in some way by data mishandling or release, the blurring of the lines between research and clinical practices, and the expectations of personal data privacy as they exist in the information technology environment.

SACGHS member Charmaine Royal, an associate research professor at Duke University's Institute for Genome Sciences & Policy, presented the issues to the committee.

She said that certain groups, such as Native American populations and other ethnic groups, as well as groups like prison inmates, could be harmed by the accidental release of information because some consent materials are limited in scope. Royal said that community engagement techniques have been used to address the issue but added that guidance is needed to get these communities involved.

There are difficulties with separating research and clinical data because consent forms for specimens collected in clinical settings will be used in genomics research and will be stored by other researchers. In addition, there are questions about the adequacy of education for providers and research participants about the meaning of genomic findings, Royal explained.

The task force may not necessarily issue recommendations or develop a report, in part because there are other groups working on genomic data-sharing policies, such as the National Institutes of Health, which has begun updating its policies on sharing genomic and sequence-related data.

NIH is developing changes that could address more than just individual privacy, but also how data is organized, used, and prioritized. One goal of NIH's efforts is to encourage investigators and internal review boards to consider adopting broad sharing of sequence and related data as they develop new consent processes and documents for studies using sequencing data.

While it was not decided firmly by SACGHS on Wednesday, the task force is likely to tackle potential group harms and how to avoid them, but it is not yet clear if it will look into the privacy issues and the blurring of the lines between clinics and research labs.

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