Health Data Sovereignty & Leveraging Health Data Value

Rejuve.AI is capitalizing on the healthcare industry's increasing focus on the need of data transparency and security. There has been a widespread increase in worries about the safety of sensitive information like genetic and biometric data that is stored by a small number of major corporations. The general public is beginning to understand that a DNA profile carries vast amounts of personal information and is more unique than a fingerprint. Theft of genetic information has the potential to become a serious issue in the future. Data breaches have previously hit DNA testing firms like MyHeritage²³ and Veritas²⁴, and hackers may be interested in the data for a variety of reasons.

Compounding this is the issue that current privacy legislation is out of date in terms of genetic privacy and was written before genetic privacy was a major concern. The Health Insurance Portability and Accountability Act (HIPAA), for example, does not apply to companies like 23andMe, Ancestry.com, GEDmatch, or companies that collect data from websites, apps, and wearables.²⁵ HIPAA only applies to 'covered entities,' which are entities traditionally associated with health care, such as doctors, hospitals, insurance companies, and business associates.²⁶

HIPAA holds these 'covered entities' to a high standard of patient data confidentiality and penalizes them when there is a data breach, however, companies like 23andMe are not considered 'covered entities' and thus are not required to handle customer genetic data with the same care. Rejuve believes that this situation will deteriorate, and we are working to address the potential chilling effect on health data sharing and monetization. Rejuve.AI hopes to make it simple and safe to share sensitive information by allowing people to control their health data and selectively grant permissioned access to third parties who are interested in observing their data.

While health-care providers have emphasized the importance of electronic medical records

(EMRs) in improving health outcomes, they have yet to develop the necessary interoperability among clinician offices, clinics, and hospitals to allow sensitive health data to be transmitted across providers. Despite the lack of standardization and the significant work that remains to be done to digitize health practices, electronic medical records (EMRs) have already proven their worth in some industries. Indeed, EMR data exemplifies the enormous and largely untapped - financial value of existing medical data. This monetary value extraction will greatly aid in the extraction of humanitarian and medical value for life extension and improvement.

²³ Norton. (2018). “MyHeritage data breach exposes info of more than 92 million users”. Emerging Threats. Available at: https://us.norton.com/blog/emerging-threats/myheritage-data-breach-exposes-info-of-more-than-92-million-user

²⁴ Whittaker, Zack (2019). “DNA testing startup Veritas Genetics confirms data breach”. Tech Crunch. Available at: https://techcrunch.com/2019/11/07/veritas-genetics-data-breach/

²⁵ Marks, Mason and Li, Tiffany. (2018) “DNA donors must demand stronger protection for genetic privacy”. Stat. Available at: https://www.statnews.com/2018/05/30/dna-donors-genetic-privacy-nih/

²⁶ Ibid.