advertisement
advertisement

Who owns your DNA? You should, according to this biodata bill of rights

Biodata reveals an essential, unchangeable part of who we are—and we should have rights to know who’s using it and what they’re doing with it.

Who owns your DNA? You should, according to this biodata bill of rights
[Source photos: Jude Beck/Unsplash; TheDigitalArtist/Pexels]
advertisement
advertisement

In the next decade, businesses and governments will increasingly collect biological data, from facial recognition to DNA. Every time you command a smart speaker, have your face scanned, or track your health on any app, it’s all going into your biological data bank.

advertisement
advertisement

Today, startups like Voicesense and Sonde Health can decode our voice to make predictions about anything from depression to defaulting on our mortgage. In the U.S., the Department of Homeland Security is planning on developing a DNA database of immigrants in federal detention facilities. Meanwhile, in China, the government is collecting DNA and biometrics from all residents aged 12 to 65 in Xinjiang, a region home to 11 million Muslim Uighurs.

Big Tech is banking on our biology, too: According to CB Insights, genomics is the second most important investment category for the top tech companies, and Alibaba is boosting investments in Hong Kong’s biotech sector.

Adding fuel to the fire, consumers are not only open to sharing their DNA but are also willing to pay more for DNA-based products. In 2019, consumer interest in DNA testing doubled when compared to 2017, and consumers are willing to pay a premium of 20% or more for products and services based on DNA, according to research by Lifenome. While sales of DNA kits from 2017 to 2019 confirm this testing frenzy, there are also signs that consumers are slamming the breaks as privacy concerns become more prominent in the news cycle.

Whether it’s our voice or our DNA, privacy matters because biodata reveals an essential, unchangeable part of who we are—and its unintended use or disclosure can expose individuals to discrimination, manipulation, and levels of surveillance that can threaten our democratic way of life.

Together with our partners at the World Economic Forum, we convened an expert workgroup of academics, entrepreneurs, and professionals in genomics, health tech, policy, and data sciences to set the foundation for a biodata bill of rights that can protect people’s basic rights from companies and governments alike.

The right to understand how your biodata is used, collected, and shared

According to Statista, there are 3.25 billion digital voice assistants being used in devices around the world. However, we are still unsure how exactly companies are using and processing voice data, including whether Alexa stores conversations from children. Simply put, companies must not be able to bypass people’s right to know how and when their voice is translated into biodata that can be used to reveal intimate details about who they are.

advertisement

Even welcome legislation like the the California Consumer Privacy Act (CCPA) leaves important gaps in how personal data is actually used. The complexity inherent in data protection can also create massive confusion when we lack a common set of principles.

Clarity is a right we just can’t take for granted anymore. When it comes to biodata, people must be clearly informed of how companies use their data, not just when the data is being traded or shared with third parties.

The right to own your biodata—and profit from it

When it comes to biodata, consumer ownership is critical not just to protect people against discrimination, but also to guarantee proper compensation. This presents technical challenges but is far from impossible.

Over the last five years, we have seen organizations like Mimirium and Madhive experiment with data ownership models where consumers own and securely store their data while organizations get access on a case-by-case basis. These models focus on personal data like social security or credit card numbers. But biodata raises the stakes significantly because while you can change a credit card number, you can’t change your DNA or voiceprint.

To prepare for the widespread use of biodata in business, we must adopt and scale distributed data ownership platforms to make it possible for people to fully own their biodata, know and manage information requests, and monetize data exchanges when appropriate.

The right to keep your biodata anonymous

Anonymous data does not guarantee actual anonymity, but experts agree that new anonymization techniques and more rigorous testing can have a real impact in protecting privacy. As technologies like facial recognition and personal genomics instantly enable public and private organizations to operate in a state of permanent surveillance, it’s important to preserve people’s right to be anonymous.

advertisement

The de-anonymized surveillance state is made worse by calls to limit anonymity for the purposes of battling trolling and bad behavior online. Some have demonized anonymity without fully acknowledging its value and role in society, running the risk of eliminating the very possibility of being anonymous for generations to come.

Today, organizations must take action by reassessing their policies and product features to put greater value on the wider range of self-expression and freedom that comes with anonymity.

The right to portable data systems designed for biodata

Data portability is enforced in the EU by the General Data Protection Regulation (GDPR) and in the U.S. by the CCPA, and perhaps in the future by an act introduced in the U.S. Senate last fall aiming to stimulate competition in the tech sector.

Compliance with GDPR and CCPA on this matter is starting to look increasingly difficult as tech platforms struggle to resolve the tension between privacy and openness. The widespread use of biodata from DNA to biometrics will exacerbate this tension, which could block competition and restrict innovation. But open standards will be essential to ensure a seamless user experience across hyper-personalized services.

Big Tech is already creating alliances like the Voice Interoperability Initiative that recognizes the importance of open standards to make voice services work at scale. Governments should take notice and learn from public experiments taking shape in Brazil and the U.K. that lean on data portability principles to prioritize competition and innovation in a way that benefits the public—not a handful of corporations.

The right to provide dynamic consent

Today, broad consent is the standard across most organizations dealing with biodata like DNA. This means that consumers generally agree to a wide range of present and future uses.

advertisement

Dynamic consent would require organizations to include specific uses and update consent requirements on a regular basis. Engineering transparency and user engagement via dynamic consent is a chance to establish an ongoing dialogue rather than yet another box that needs to be checked.

A more open and intentional approach to consent can be the difference between people actively avoiding volunteering their data or being receptive to new offerings. It’s the difference between FitBit users investigating how to delete their data before Google takes charge, and Apple recruiting 400,000 research participants in under eight months.

Securing consent and active participation via transparent methods like Apple’s new research app shows how to establish an ongoing line of communication centered on the use and value of biodata.

The market is ready—governments and corporations are not

Our research shows that consumers are drawn to the promise of products, services, and experiences personalized to the extreme, resulting in a significant demand for products driven by biodata. At the same time, governments and the private sector are radically expanding the collection and use of biodata.

The question is then, how do we shape a future where biodata improves our way of life rather than becomes a catalyst for a dystopian state of permanent surveillance? The answer begins with acknowledging the fundamental rights that are under threat and demanding a universal agreement to protect them before it’s too late.


Camilo La Cruz is the chief strategy officer at cultural consultancy Sparks & Honey. The biodata bill of rights and findings weaved throughout this piece are explored in detail in the company’s latest report, Precision Consumer 2030