Virginia Code 59.1-595: Information to be made available to consumers
A. Every direct-to-consumer genetic testing company shall provide to consumers:
Terms Used In Virginia Code 59.1-595
- Complaint: A written statement by the plaintiff stating the wrongs allegedly committed by the defendant.
- Consumer: means a natural person who is a resident of the Commonwealth. See Virginia Code 59.1-593
- Direct-to-consumer genetic testing company: means an entity that (i) offers consumer-initiated genetic testing products or services directly to a consumer or (ii) collects, uses, or analyzes genetic data that is collected or derived from a direct-to-consumer genetic testing product or service and is directly provided by a consumer. See Virginia Code 59.1-593
- Express consent: means a consumer's affirmative authorization to grant permission in response to a clear, meaningful, and prominent notice regarding the collection, use, maintenance, or disclosure of genetic data for a specific purpose. See Virginia Code 59.1-593
- Genetic data: includes uninterpreted data that results from the analysis of the biological sample and any information extrapolated, derived, or inferred therefrom. See Virginia Code 59.1-593
- Genetic testing: means any laboratory test of a biological sample from a consumer for the purpose of determining information concerning genetic material contained within the biological sample, or any information extrapolated, derived, or inferred therefrom. See Virginia Code 59.1-593
- Process: includes subpoenas, the summons and complaint in a civil action, and process in statutory actions. See Virginia Code 1-237
1. A summary of the company’s (i) policies and procedures related to the collection, use, maintenance, retention, disclosure, transfer, deletion, and security of and access to genetic data and (ii) privacy practices;
2. Information regarding the requirement for express consent for the collection, use, and disclosure of genetic data and the process for revoking express consent pursuant to § 59.1-596;
3. Notice that a consumer‘s deidentified genetic or phenotypic data may be shared with or disclosed to third parties for research purposes in accordance with 45 C.F.R. part 46; and
4. Information about the process by which a consumer may file a complaint alleging a violation of this chapter.
B. Information required to be made available pursuant to subsection A shall be written in plain language and shall be provided to consumers together with any genetic testing product provided to consumers. Such information shall also be included on any website maintained by the direct-to-consumer genetic testing company in a manner that is easily accessible by the public.
2023, c. 526.