People pay a huge price for their genetics, but DeSci has a solution 

DeFi has transformed the way we invest and transact by decentralizing data and information, providing a rare level of sovereignty.

Now, a similar concept—decentralized science (DeSci)—is emerging as a powerful tool for the health industry. DeSci could potentially be a force for good by making research and data more accessible to patients, researchers and healthcare professionals alike. Thus, by employing blockchain, DeSci ensures security and transparency, solving problems associated with privacy, consent, and openness to accessing various types of knowledge.

Data security and privacy, particularly regarding an individual’s health records, have become areas of concern. The healthcare industry, in particular, has had several challenges in maintaining secure information, including cybersecurity incidents, ransomware attacks, and data breaches.

For example, ransomware attacks on healthcare giants such as Kaiser and Welltok affected 13.4 million and 8.49 million individuals. These attacks exposed sensitive personal and health-related information, highlighting the risks associated with inadequate data protection.

While the risks associated with genetic data are significant, decentralized technologies offer promising solutions. DeSci has emerged as a potential game-changer, promising to revolutionize how we collect, store, and share genetic information. By leveraging blockchain technology, DeSci can, potentially, create a more secure and transparent environment for genetic research and patient care.

The consequences of genetic data ownership

Our genetic makeup is the blueprint for who we are. It dictates physical characteristics and contains information about our health risks, behavior, and ancestry. While genetic data holds immense potential for medical breakthroughs, it also presents a serious risk if mishandled or exploited. 

Recent cyberattacks have targeted healthcare databases, raising concerns about the security of genetic information. Losing control over such personal data could have devastating consequences, from discrimination in insurance or employment to the commercial misuse of our DNA.

In December 2020, Blackstone, the world’s largest alternative investment firm, acquired Ancestry.com for $4.7 billion. 

The acquisition wasn’t just a financial move to diversify Blackstone’s portfolio—it also gave the firm access to an enormous database of genetic information. Ancestry.com, a leading consumer genealogy platform, has over 25 million users who have submitted their DNA for analysis.

Such investments have contributed to a 13% increase in Blackstone’s stock price year-to-date, reaching $143.34 USD as of this publication. 

While analysts maintain optimism about the firm’s future earnings, this acquisition also sparked ethical and privacy concerns. The ownership of such sensitive data by a profit-driven private equity firm raises the question of how this genetic data might be used—or misused—moving forward. 

Related: Stop giving your DNA data away for free to 23andMe, says Genomes.io CEO

Could this data be sold to third parties? Could it be used to develop genetic surveillance tools or discriminatory policies in healthcare and insurance? These are not hypothetical concerns but real risks without stringent regulations.

When corporations such as Blackstone acquire the rights to manage genetic data, the risk of exploitation increases significantly. In addition to the possibility of discrimination, concerns are related to privacy and materialization of such intimate data.

Genetic data could become a tool for surveillance, allowing powerful entities to profile individuals based on their health predispositions or ancestry. The power imbalance between individuals and these corporations could leave people vulnerable to exploitation without proper safeguards.

The question of consent and the need for a regulatory framework

Did Ancestry.com users fully understand what they consent to when submitting their DNA? 

Many users may not have realized that their genetic information could end up in the hands of a private equity firm like Blackstone. The notion of consent becomes even murkier when considering that relatives of those who submit DNA could also have their genetic data indirectly exposed without ever agreeing to it.

In 2023, a class-action lawsuit challenged Blackstone’s acquisition of Ancestry, arguing that the deal was more about gaining access to genetic data than genuine interest in genealogy. The plaintiffs pointed out that the $4.7 billion purchase price suggests that Blackstone’s motivation was primarily financial rather than a focus on heritage research.

Unfortunately, while rapid progress is being made in genomics, there remains no single standardized set of rules for dealing with these concerns worldwide. Each country has its set of rules regarding legislation, and there is no clarity regarding who is responsible for supervising these fragmented systems.

Current approaches to providing secure and yet transparent genome management seem inadequate, and Genomes aims to address this important need by focusing on responsible processing of genetic information and individuals’ health information rights. in the field of genomics.

However, the healthcare industry is becoming increasingly vulnerable to cyber threats. Research indicates that in 2023, data breaches targeted more than 124 million people. As much attention is paid to exterior criminal risks, internal corporate recklessness in the safeguarding of information is worrisome. Regarding personal genetic information, they proposed that it should be well protected against criminals or corporate entities taking advantage of the data.

The growing market of data monetization

As awareness of data privacy grows, more individuals are seeking ways to profit from their data. In 2023, the global data monetization market was valued at $3.3 billion and is expected to grow to $41.25 billion by 2034, based on data by Precedence Research. This surge is driven by advances in technology, personalized services, and heightened consumer awareness about data ownership.

With genetic data now part of this landscape, individuals may soon be able to monetize their DNA. However, this, again, raises more ethical concerns. If private companies can profit from genetic data, how much control will individuals truly retain over their own genetic information?

DeSci and the future of genomics

Though genomics is still an advancing field, it becomes evident that the rights of individuals should be protected by stricter laws. An ideal legal system that supports and regulates such types of tests should protect the rights and privacy of the patient, seek their consent, and prevent them from being discriminated against on genetic grounds. In the US, such a framework exists but remains limited, while in the international context, complex cooperation is necessary to standardize the rules.

This is where decentralized science could come in handy, especially given the interest being fostered by investors. DeSci, through the application of the blockchain, shifts power from conventional institutions and returns the authority to the owners of genetic information. Thus, DeSci can solve the problems of ethical concerns caused by the private corporate ownership of gene data through the principles of transparency and security.

However, the Blackstone-Ancestry deal reminds us that we need to establish safe, clear, and enduring models for processing and analyzing genetic information. Although private companies and technology companies might continue to regulate themselves, self-regulation will never be sufficient.

Governments, tech companies, and decentralized models, as exemplified by DeSci, must work in tandem to prevent the exploitation of genetic data and successfully implement such a transformative change in medical practice. As genomics and genetic research continue to evolve, the delicate balance between technological innovation and ethical responsibility for the future will be crucial.

Aldo de Pape is the co-founder and CEO of Genomes.io, a biotech DAO focused on the safe, private and auditable monetization of genomic data. Previously, he founded TeachPitch, a cloud-based platform that helps teachers and schools resolve the problem of information abundance through curation, online tutoring and AI. Aldo worked in publishing for Springer and Macmillan (Digital Science) and authored a children’s book, I am!, published in 2008. Aldo holds an MA in international relations from Utrecht University and an MA in general management from the Vlerick School of Management.