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Seeking Comments

The US National Institutes of Health released a draft genome data-sharing policy in September, and an editorial in Nature urges researchers to comment on it before the feedback period ends this month.

The policy, Nature says, could have long-reaching effects as it covers "a huge swathe of research, including sequencing human and non-human genomes, genes and gene variants, as well as transcriptomic, epigenomic and gene-expression data" that is funded by NIH. It also tackles tricky issues — especially for human datasets — including the timing of data sharing, privacy, and length of data sharing

For example, the draft policy says research participants should be told during the informed consent process that their genomic and phenotypic data may be shared for future research and whether that data will be in an open or controlled-access database. Identifying information should be stripped from the data and each participant assigned a random code. Researchers, it says, should address their data-sharing plans in their proposals.

Studies involving human genomic data, it adds, should be registered with the Genotypes and Phenotypes database and the data produced should be deposited in repositories like dbGaP or the Cancer Genomics Hub, among others.

Given its potential impact, Nature urges researchers to comment on the policy — it says only 18 comments have been received thus far — before the feedback period ends later this month.

"Once finalized, the regulations will become part of a patchwork of international research regulation on the sharing of genomic data," Nature notes.