By Jaime A. Garza, Esq., and Kevin Keegan Published Oct 15, 2021 Source: Linked In Photo Source: Unsplash, Abed Ismail
You are born with a distinctive set of data and information that in a fundamental way makes you unique as an individual. Your personal data and information include, but are not limited to, your DNA, your cells, your fingerprints, and your iris pattern. You may assume that you naturally own all of that very personal and unique data and information. However, that is not necessarily true.
This is one of the lessons of the hit book and movie, “The Immortal Life of Henrietta Lacks.” As told by author Rebecca Skloot and members of the Lacks family, while Henrietta was dying of cervical cancer, doctors cut tissue samples “without [her] knowledge or consent.” Using her personal information, scientists discovered the HeLa cell line which, it is estimated, generates billions of dollars in revenue for life science and biotechnology companies worldwide…and little or no money for Henrietta or her family.
In early October, at a federal courthouse in Baltimore, MD, a high-powered team of attorneys filed a lawsuit on behalf of the Henrietta Lacks estate. This case has the potential, in addition to offering justice to this family, to have an impact on your intellectual property rights.
Specifically, one of the attorneys, Ben Crump, asked during a recent news conference, “Why is it [the companies] have intellectual rights to [Henrietta’s] cells and can benefit billions of dollars when her family, her flesh and blood, her Black children, get nothing?”
Many companies gather personally identifiable information from you every day. Some collect your metadata. Others collect your biometric data. Many others collect personally identifiable information. Oftentimes, this is done without the consumer’s informed consent or reasonable knowledge.
This is where Henrietta’s story may influence your personal story down the road. To paraphrase Attorney Crump, you may ask, ‘Why do companies have the right to profit from any or all of my personal data and information without me or my family benefiting?’
Fortunately, today, investors who fund startup technology companies may want to give consumers and citizens better options in the near future. Digitally responsible companies have many options to collect a reasonable amount of your information or data in ways designed to benefit you and the services you receive. Digitally responsible companies can invest in cybersecurity frameworks to protect the data they collect from you. Digitally responsible companies can lead with transparency and work to ensure you have the knowledge you need to make informed choices about your personal data
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What technologies can impact your health? How could you be mis-diagnosed? How can bio-technology or medical devices impact your health?
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