How DeSci Can Support Personalized Medicine Research (And Is)

Everyone’s different, from musical taste to opinions on the appropriateness of pineapples on pizza. And in light of these differences, we typically don’t treat everyone the exact same way, whether it’s avoiding bozos or buying flowers for friends. But, personalities aside, most people still follow some guidance of the Golden Rule. (Treat others how you’d like to be treated.) When it comes to medicine and the Hippocratic Oath of “Do no harm,” it seems that many researchers and doctors are uncovering some viability of advancing the Hippocratic Oath into the realm of Golden Rule-ishness. In other words, an increasing number of researchers and doctors are advancing the principle of personalized medicine.

While the fear of adverse effects of a particular treatment may still stay top of mind, through advancements in technology, research, and collaboration, clinicians are getting closer to proactively “Treating others how they’d like to be treated” instead of “Do no harm.” In short, a personalized medicine approach at the onset could assuage the fear of “doing no harm” — a common and reactive sentiment often associated with wielding blunt diagnostic and medicinal approaches and hoping the patient avoids any adverse effects. (There’s an entire oath about it.)

Proactive versus reactive.

The Growing Popularity of Personalized Medicine

For the reasons stated above, personalized medicine has garnered a lot of attention as a potentially revolutionary approach to healthcare. Personalized (or precision) medicine aims to tailor a medical treatment that aligns with the individual characteristics of each patient, such as genetic makeup, environment, and lifestyle factors. 

You may ask, “Why weren’t we ‘personalizing’ treatments before?” In fairness to previous generations of doctors and researchers, it was nearly impossible to do so. In the past, medicine and other medical treatments had to be based on broad population averages, resulting in a “one-size-fits-all” approach. However, new technology, such as advancements in machine learning and predictive modeling, is now making true personalized medicine more viable.

That said, personalized medicine research still faces significant challenges, particularly when it comes to data sharing, collaboration, and access to high-quality, large-scale datasets. This is where decentralized science (DeSci), an emerging field leveraging blockchain and decentralized technologies, can play a crucial role in overcoming the challenges faced by personalized medicine researchers.

Key Challenges in Personalized Medicine Research

The promise of personalized medicine relies heavily on our fairly recent insights into genetics and genomics and our — again, fairly recent — technological ability to observe and assess large datasets through machine learning models. If genetics and genomics affect health, disease, and an individual’s drug response, then tailoring treatments to a unique genetic makeup could result in more accurate diagnoses, better disease prevention, and safer drug prescriptions, creating a more powerful and, yes, more cost-effective healthcare system. However, there are some important challenges that personalized medicine researchers face, such as:

Data Accessibility and Integration: As stated, personalized medicine relies heavily on large datasets, including genetic data, clinical information, and lifestyle factors. Different institutions typically silo these datasets, making it difficult to access and integrate them effectively. Researchers face challenges in acquiring diverse, high-quality data that can support robust analyses.

Privacy Concerns: Due to the sensitive nature of healthcare data, privacy is a major concern. Researchers must comply with strict data privacy regulations such as HIPAA in the U.S. or GDPR in Europe, which can limit the flow of data and slow down research.

Collaboration Barriers: Research in personalized medicine requires collaboration across disciplines, institutions, and borders. However, centralized platforms and traditional funding models often create barriers to seamless collaboration, reducing the speed at which new insights are discovered.

Reproducibility and Transparency: Ensuring the reproducibility of experiments and making research data publicly available are crucial for the scientific community. Centralized systems often make it difficult to track data provenance, which can undermine the reliability of findings.

DeSci Can Face These Challenges

The aforementioned challenges are not mutually exclusive to personalized medicine researchers. Siloed information, data accessibility, collaboration barriers, and transparency are issues that impede scientific progress, writ large. That is why the ethos, principles, and practices of decentralized science could play such a pivotal role in advancing personalized medicine. Here’s how:

Facilitating Secure and Transparent Data Sharing

Blockchain technology, the core infrastructure of DeSci, can provide a secure and transparent way to share and store data. By utilizing decentralized platforms, researchers can share medical datasets in a manner that ensures patient privacy. Blockchain’s immutability ensures that once data is entered into the system, it cannot be altered, preserving data integrity.

In addition, researchers can use smart contracts to automate the permissions process, ensuring that only authorized individuals or institutions have access to sensitive data. Researchers could also control how their data is shared and even monetize it through tokenization, creating incentives for data sharing and collaboration.

Enabling Decentralized Collaboration

In personalized medicine, interdisciplinary collaboration is key. DeSci platforms can enable researchers from around the world to collaborate without the need for intermediaries. By using decentralized repositories and open-access publishing models, researchers can share findings in real-time, promoting quicker dissemination of knowledge.

Token-based incentives could also encourage contributors to share data, insights, and resources, creating a thriving ecosystem where researchers are rewarded for their input. Additionally, blockchain-based peer review processes can ensure that contributions are validated and verified transparently, reducing the risk of fraud or bias.

Protecting Patient Privacy

Privacy-preserving technologies like zero-knowledge proofs (ZKPs) and homomorphic encryption could address privacy concerns while still enabling valuable data analysis. These technologies allow researchers to analyze aggregated data without accessing personally identifiable information (PII). This could help strike a balance between the need for data access and the protection of patient confidentiality, addressing one of the most significant obstacles to personalized medicine research.

Ensuring Data Provenance and Reproducibility

Blockchain’s inherent transparency can support personalized medicine by ensuring data provenance, meaning that the origins and transformations of datasets can be traced throughout the research process. This can enhance reproducibility, a critical issue in scientific research. Researchers could verify the authenticity and history of data, ensuring that their findings are built on high-quality, reliable information.

Moreover, decentralized systems can help researchers maintain open access to their datasets and experimental methodologies, making it easier for others to replicate studies and validate results. This level of transparency could increase trust in personalized medicine research and accelerate the adoption of new treatments.

Promoting Inclusion and Diversity in Research

One of the limitations of traditional research models is that they often fail to represent diverse populations, which can hinder the development of personalized medicine solutions. DeSci can make it easier for researchers from underrepresented communities to participate in research, providing more robust datasets. This inclusivity could help ensure personalized medicine research benefits individuals from all backgrounds, leading to more effective and equitable healthcare solutions.

Lowering Costs and Reducing Barriers to Entry

The traditional funding model in personalized medicine can be slow and costly. DeSci platforms could lower the cost of research by cutting out intermediaries and enabling direct collaborations between researchers, institutions, and funding bodies. Tokenization of research milestones could also allow researchers to raise funds more democratically and transparently, providing opportunities for smaller teams and independent researchers to contribute to personalized medicine discoveries.

DeSci Is Facing These Challenges

DeSci Hub recently spoke with Marco Huberts and Ayat Abourashed, the co-founders of PoSciDonDAO (SCI), a decentralized autonomous organization that funds personalized medicine research for life-altering diseases, such as cancer and Alzheimer’s disease. 

Marco Huberts has led personalized medicine research projects that involve viro-immunotherapies for pancreatic cancer. Huberts is currently researching cancer-killing viruses. Yes, cancer-killing viruses in the cells of organoids. As you can imagine, the very nature of this cancer treatment approach would need to be personalized to better predict the patient’s response. Ayat Abourashed is an infectious disease epidemiologist who has also led many research projects, namely creating predictive models by analyzing large datasets to help monitor, prevent, and control mosquito-borne disease. 

Would a cancer-treated virologist and mosquito-studying epidemiologist with data science skills cross professional paths under traditional circumstances? Maybe. However, PoSciDonDAO’s stated goal is to revolutionize research funding for personalized medicine by supporting worthy projects, and that shared vision was born out of a collaboration of skill sets each individual brought to the table. 

Personalized medicine will require a lot of collaboration from seemingly disparate fields of study. And, like PoSciDonDAO, that collaboration is DeSci — a proactive movement that supports proactive healthcare approaches like personalized medicine. The future of healthcare may not only be personalized; but also decentralized, democratized, and driven by a global network of innovators working together for the common good. After all, everyone’s different.