When sharing samples with BioSEND prospectively, we recommend the following components be included in the informed consent to ensure samples can be shared. The wording listed below is only a suggestion and will need to be tailored to institution and study specific requirements.

The language listed below references “biological samples”. Depending on your study and institution’s requirements, this may need to be more specific (for example: DNA, plasma, etc.).

Language Index

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Language to allow sharing of samples and data with BioSEND and other researchers (including for profit and not for profit)

Results/data may be provided to a government health database

Any type of disease vs. disease-specific

For Profit vs. Not for Profit research sharing

Samples will be used to generate genomic data (do not limit to GWAS)

Samples will be stored indefinitely

Withdrawal of Consent

GINA language

General Recommendations

When possible, it is best to not include check boxes. Tracking of the various responses possible when check boxes are present can be challenging and lead to potential errors.

All studies and all institutions will have different requirements but the more broad the consent can be written initially, the more flexibility you will have in the future.

We also recommend visiting the NIH website for additional information.