Nimblegen SeqCap Custom Panel Sequencing

Data policy for data release for the NETWork! data

Data release This statement defines how other researchers can access the data used in this research. Microarray RNA expression data (Affymetrix mRNA, and Affymetrix miRNA data), microarray methylation data (Illumina Infinium data) and clinico-pathological annotation, is available to external researchers via EGA. We will also make DNA sequence data from tumours and corresponding normal tissues available to researchers. However, we have obligations to provide this data through a specific process. Specific values are ascribed to DNA information by New Zealand Māori (1), requiring a unique culturally specific approach to sharing genomic datasets. Māori have expectations about linkage of genomic and clinical datasets that are summarised in New Zealand's definitive Guidelines document on genomic research with Māori which states that "… there is an expectation of Māori involvement in governance over access to and the linking of data" (2). This requirement for shared governance is consistent with obligations under New Zealand's founding document, The Treaty of Waitangi. To meet this expectation, a specific governance process will be required for external researchers to access the DNA sequence data from this study. In addition, we have an obligation to protect the identity of patients included in this study. This is particularly important where there are small numbers of patients of specific ancestry that might lead to identification of individual participants, and in light of the fact that we had ethical approval to include unconsented patients in some cases. The governance process will require external researchers to apply to a governance group with Māori representation for access to the data. The application will require a detailed list of the data requested, the research objectives, study methodology and funding. Data access will be granted on the condition that: (i) the proposed study does not use this data in genetic or genomic comparisons based on ancestry, either alone or combined with other data sets, (ii) that the data is not passed on to other researchers, (iii) a list of specific types of scientifically inappropriate analysis and reporting methods will not be used (3) and (iv) a research report and copies of any publications resulting from the research are submitted to the governance group. The governance group will not be concerned with any aspect of intellectual property. References 1. Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, Toki V, Uerata L and Wilcox P. He Tangata Kei Tua: Guidelines for Biobanking with Māori. October 2016. Te Mata Hautu Taketake, University of Waikato, Hamilton, New Zealand. (Page 32). 2. Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, Toki V, Uerata L and Wilcox P. Te Mata Ira: Guidelines for Genomic Research with Māori. October 2016. Te Mata Hautu Taketake, University of Waikato, Hamilton, New Zealand. (Pages 36-37). 3. Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, Toki V, Uerata L and Wilcox P. Te Mata Ira: Guidelines for Genomic Research with Māori. October 2016. Te Mata Hautu Taketake, University of Waikato, Hamilton, New Zealand. (Pages 30-33).