Commercialization of Biological Data

1.0 Summary

Personal biological data (for example, information about one’s genetics, facial features, and gut biome) is a growing commodity that can be captured, bought, sold, traded, and turned into other products and services.

A variety of strategies are emerging to generate profits from human biological data. These strategies include using biological data to offer hyper-personalized products and services, manipulate consumer behaviour through bio-informed marketing, and provide genetic sequencing and surveillance services. Buying, holding, and selling valuable biological datasets is also becoming an investment strategy.

These trends could have far-reaching policy implications in terms of privacy, ethics, equity, and consumer protection. For example, access to biodata may accelerate both the emergence of powerful new therapies and the drive to privatize healthcare as new profit models develop. In addition, informed consent to use one’s data today may not take into account all future use cases. Current genetic privacy laws may be ill-equipped to protect consumers if market forces encourage firms to maximize the collection and use of biodata. Lastly, massive biosurveillance databases raise the stakes of biocrime and state abuse.

This brief aims to deepen readers’ understanding of the commercialization of biodata and its implications for a range of policy areas, including some that may be unexpected. Anyone who engages with the following areas might find this brief relevant to their work: security, industry, research and development, trade, international, energy, environment, identification and privacy, rights and social justice, and governance. Thinking about the changes shaping the future of the commercialization of biodata can help decision-makers understand some of the forces already influencing their policy environment. Considering the potential implications of such changes can also help policymakers identify opportunities to make decisions today that may benefit Canada in the future.

2.0 Introduction

Today, individuals leave behind a vast trove of personal digital information as they browse the Internet, order lunch, message friends, or scan a concert ticket. Companies have long exploited these datasets, seeking to profile, predict, and manipulate consumer behaviour with the help of artificial intelligence (AI) tools that can extract key behavioural patterns from them.

But the exploitation of personal data extends far beyond our online clicks and likes: our physical bodies leave digital traces all around us. Smart watches capture users’ heartrates throughout the day, and facial recognition software can identify individuals on a crowded city sidewalk.

Thanks to rapid advances in sensing and AI analysis tools, biological data are providing an increasingly intimate window into an individual’s preferences, needs, characteristics, and behaviours. Human biological data—the information obtained from the human body and its physical activities—are becoming a valuable commodity that can be bought, sold, and traded like any other. This could influence power dynamics between different groups, while raising new ethical and policy concerns.

3.0 What is changing

New strategies are emerging to generate profit from human biological data. These include using biological data to offer hyper-personalized products and services, manipulate consumer behaviour through bioinformed marketing, and provide genetic sequencing and surveillance services. Buying, holding, and selling valuable biological datasets is also becoming an investment strategy.

4.0 Policy implications

The commercialization of biological data has important implications for privacy, ethics, consumer protection, and security.

New data-driven and platform-based health services^Footnote33 may produce novel therapeutics—but may also accelerate privacy and equity challenges in healthcare. AI facilitates the integration of multiple sources of health data, providing the potential for novel healthcare insights, treatments, and breakthroughs. By expanding portable testing and treatment options, new platform-based health services may expand anytime, anywhere access to healthcare. However, if increasingly essential healthcare services depend on individuals providing personal data to governments or private companies, those individuals may lose the practical power to consent to (and opt out of) these services. In addition, if these platforms are privately owned, they may worsen unequal access to healthcare. Competition with public healthcare could intensify as health outcomes and profits become tied to profitable health data collection, targeted advertisements, and new predictive products.

Informed consent for the use of biological data today may not cover the analyses that can be done on biological data in the future, or its use in developing future commercial products. Individuals who purchase DNA testing hand over their data based on knowledge of how it can be used today. However, they may be forfeiting control over their data to corporations or state actors for many decades to come, and for future use-cases and products that may be difficult to predict. For instance, while the technology remains limited today, advances in DNA phenotyping and generative AI may soon allow researchers to more accurately reconstruct a person’s face^Footnote34 based on their DNA, paving the way for DNA mugshots.^Footnote35 Moreover, while one individual may consent to handing over their genetic information, their genome also contains information about their relatives—in many cases, individual consent to genetic testing may in fact implicate their current and future relatives.

Genetic privacy policies and protections may not be living up to their intended purposes as genetic testing becomes increasingly profitable. Laws enforcing genetic nondiscrimination currently ensure that no one is forced to undergo a genetic test or share genetic testing information with insurance companies and employers.^Footnote36 However, businesses could use coercive or manipulative incentives to acquire genetic information.^Footnote37 For example, private firms could make access to important new health products and services conditional on obtaining consumers’ genetic data, undermining the principles of free, prior, and informed consent.

As biodata breaches become more common, biocrimes may compromise both personal privacy and national security. Armed with AI tools, hackers with social, political, or monetary motivations may increasingly target databases containing sensitive health and genetic information. Personal data may be used against targeted individuals, as in cases of genetic blackmail.^Footnote38 At the population scale, a recent breach of 23andMe user data appears to have targeted a particular ethnic or racial group.^Footnote39 This highlights the potential national security risks of such datasets and the growing potential for targeted attacks along geographic or racial lines.

eDNA, combined with new AI tools, can help monitor people, creating both new privacy risks and public health opportunities. Sampling human DNA from air, soil, and wastewater already provides new public health intervention opportunities with the early detection and tracking of communicable diseases. However, in the future, eDNA sampling may also be used for human surveillance (either through accidental or intentional DNA capture).^Footnote40 Especially when paired with high-performance AI tools, eDNA technology could easily help capture the location, health, and identity of individuals without their consent, raising serious privacy concerns.^Footnote41 The risks may increase as eDNA technologies become widespread and readily available for consumer use.

Consumer protection agencies responsible for health-related product verification and quality control may struggle to keep up with new kinds of direct-to-consumer bioproducts and bio-services. Microbiomics companies offer gut bacteria-testing services that claim to determine one’s epigenetic age^Footnote42 or epigenetic health, even though these claims are difficult to validate. Some have also raised concerns about the validity and ethics of using direct-to-consumer genetic ancestry tests to establish the nationality of migrants detained at borders.^Footnote43 At present, it is difficult to assess whether many direct-to-consumer services are valid, raising new consumer protection challenges for regulatory agencies. In the future, the spread of these products and services may outpace institutions’ ability to monitor and regulate them, increasing the risk that problematic bioproducts reach the market.

5.0 Conclusion

Technological advances are accelerating companies’ ability to obtain and analyze personal biological data—from gut biome profile to genetic risk for specific health challenges. This information can help create personalized products and services, new forms of bio-marketing, genetic surveillance, and data trading and speculation. As new opportunities to generate profits from personal biological data appear, power dynamics between individuals, firms, and governments may shift. These developments carry considerable opportunities, risks, and challenges for policy makers in the privacy, ethics, innovation, and consumer protection.

Acknowledgements

This foresight brief synthesizes the thinking, ideas, and analysis of many contributors through research, interviews, and conversations. The project team would like to thank the experts who generously shared their time and expertise in support of the research, including those who chose to remain anonymous.