The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in American discourse.
This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.
McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia. These scenarios could be used to inform the decision-making of data access and research ethics committees by enhancing understanding of the downstream uses of genetic sequence information. Scenarios 1 - 6 are available in Table 3 of the linked publication.
This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database). It describes key concepts outlined in the consent form, includes testimonials on the importance of data sharing, and contains information on the risks and benefits involved. The brochure was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.
The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form. It include testimonials on the importance of data sharing as well as information on the risks and benefits involved. The video was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.
This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting. The language use on the form is consistent with the NIH Genomic Data Sharing Policy and the NHGRI Informed Consent Resource. The consent form was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care. The file contains two pages; one with the ClinGen logo in the bottom corner and the other without the logo.