S.863 - Genomic Data Protection Act (119th Congress)
Summary
The Genomic Data Protection Act aims to provide consumers with greater control over their genomic data. It allows consumers to access and delete their genomic data held by direct-to-consumer genetic testing companies. The bill also mandates notifications to consumers regarding data usage and company acquisitions.
Expected Effects
This act would likely increase consumer trust in direct-to-consumer genomic testing companies. It could also lead to changes in how these companies handle and share genomic data. The FTC would gain increased authority to regulate this industry.
Potential Benefits
- Enhanced Privacy: Consumers gain more control over their personal genomic data.
- Increased Transparency: Companies must provide clear notifications about data usage and rights.
- Accountability: The FTC gains authority to enforce the act, holding companies accountable for violations.
- Consumer Choice: Individuals can choose to delete their data and request destruction of biological samples.
- Protection During Acquisitions: Consumers are notified and retain control over their data if a company is acquired.
Most Benefited Areas:
Potential Disadvantages
- Potential for Reduced Research Data: Easier data deletion could limit the amount of data available for medical research.
- Compliance Costs: Direct-to-consumer genomic testing companies may face increased compliance costs.
- Enforcement Challenges: The FTC may face challenges in enforcing the act effectively.
- Exceptions for Legal Requirements: Data retention is still required under certain legal circumstances, limiting complete deletion.
- Potential for Misinterpretation: Consumers may not fully understand the implications of deleting their genomic data.
Constitutional Alignment
The Genomic Data Protection Act aligns with the spirit of the Fourth Amendment, which protects against unreasonable searches and seizures. While the Fourth Amendment primarily applies to governmental actions, this act extends similar privacy protections to the realm of private companies holding sensitive personal data. The act does not appear to infringe upon any specific constitutional provision and aims to balance individual rights with the potential benefits of genomic research.
Impact Assessment: Things You Care About ⓘ
This action has been evaluated across 19 key areas that matter to you. Scores range from 1 (highly disadvantageous) to 5 (highly beneficial).