Requires companies who sell DNA testing kits to inform a purchaser of certain information. (8/1/18)
Impact
If enacted, SB 442 will amend existing Louisiana laws to require specific disclosures from DNA testing companies. This new regulation is designed to protect consumer rights and privacy, addressing concerns about unauthorized use of DNA. By ensuring that users are informed of their options regarding data sharing and ownership, the bill aims to promote transparency in the rapidly-growing field of genetic testing, which has significant implications for personal autonomy and informed consent in medical and research contexts.
Summary
Senate Bill 442, also known as the 'Henrietta Lacks Act', aims to enhance consumer protection by mandating that companies selling DNA testing kits provide clear and comprehensive information to users. This includes details on whether users' DNA may be used for scientific research beyond the service purchased, if consent is required, and if the user's DNA could be shared or sold to third parties. The bill highlights the importance of user awareness regarding the implications of submitting personal genetic material for testing and the potential for that information to be utilized in ways that consumers might not expect.
Sentiment
The sentiment surrounding SB 442 appears to be generally positive, viewing the bill as a necessary step to safeguard consumer rights and promote ethical practices within the DNA testing industry. Supporters argue that the legislation is crucial for protecting individuals from potential misuse of their genetic information. However, there may be apprehensions from the industry regarding the administrative burden of compliance and the implications for innovation in genetic research.
Contention
While the bill has garnered support for its focus on consumer protection, it also raises questions about the potential impact on businesses that provide DNA testing services. Concerns have been raised regarding how stringent compliance requirements may affect the operational modalities of these companies, particularly those that prioritize research and development. Additionally, the ability to retain ownership of one's DNA and control over its use could lead to debates over commercial ethics in the field of genetic testing.
Establishes the Genetic Information Privacy Act, which would require a direct-to-consumer genetic testing company, as defined, to provide a consumer with certain information regarding the company’s policies and procedures regarding use of genetic data.
Enacts the New York privacy act to require companies to disclose their methods of de-identifying personal information, to place special safeguards around data sharing and to allow consumers to obtain the names of all entities with whom their information is shared.