safeguard the integrity, privacy, and security of genetic data and provide a civil penalty therefor.

More genetic privacy for South Dakota consumers

The law protects South Dakota residents using direct-to-consumer genetic testing services, covering conduct within the state. Covered companies must publish plain-language privacy policies and prominent notices explaining data collection, use, sharing, access, deletion, storage, and security. Notices must say whether data stripped of identifying details may be shared for research under federal research protections. Companies must get written consent, including electronic consent, before collecting, using, or sharing genetic data. Initial consent must explain data uses, access to test results, and who may access or share data. Separate consent is required for each disclosure outside vendors and service providers, each use beyond the service’s main purpose, and keeping samples after testing. Separate consent is also required to use your genetic data to market to another consumer, directly or through a third party. Research sharing requires informed consent under federal protections, as does company-controlled research intended for publication or broader scientific knowledge. You can access or delete your genetic data, delete your account, request sample destruction, and withdraw consent. Companies must offer a withdrawal method through their main way of communicating with you and honor withdrawals within 30 days. If you withdraw sample-storage consent, they must destroy the sample within 30 days. Companies must maintain data security programs; contracted service providers have the same confidentiality duties for samples, genetic data, and identifying information. The attorney general can ask a court to impose civil penalties of up to $5,000 per violation. Exemptions cover HIPAA-protected health information; medical screening, diagnosis, or treatment samples and data; colleges and their entities; qualifying criminal-investigation forensic labs; qualifying research-only entities; and licensed hospitals, their labs, and affiliated health facilities.