DeSci – (How) Will It Make Research Great Again?

One of the biggest challenges for medical scientists is to find a sustainable source of funding. In most places around the world, Governments or public organizations provide funding for medical research, which is good, as there are fewer chances of conflict of interest, but there is not enough. This means researchers will then look for private funding, which will only support science if it supports their corporate agenda. This is catastrophic because it means that some science is guided not by what is good for society/humanity in terms of science, but by what will make the most return on investment to these private funders. Much of nutrition science is funded by the food industry, and this is a major conflict of interest, food companies will not change the results of research, but they will not fund something if the hypothesis goes against their interests, thus shaping how science evolves.

A significant portion of healthcare spending is on drugs to treat conditions like type 2 diabetes, hypertension, and high cholesterol, which are largely caused by poor diet and a lack of exercise. Implementing policies like stricter regulations on unhealthy foods and drinks, subsidized healthy school meals, and courses on preparing nutritious and affordable meals can help people lose weight, making drugs unnecessary. The research done by pharmaceutical companies is often focused on profitable markets. Only around 1% of newly developed drugs in the late 20th century were for tropical diseases like African sleeping sickness, dengue fever, and leishmaniasis. As a result, only a single new drug has been introduced in the past 50 years to treat tuberculosis, which claims the lives of millions of people each year.

Since scientists have to compete for this finite and decreasing amount of funding (at least for public funding), it creates conflicts of interest between scientists of the same field, puts pressure to publish many papers instead of a few quality ones, and forces scientists to oversell their work (use buzzwords to get funding). This competition between scientists for funding affects what people study, the risks they take, and the risks they don’t take, overall it pushes researchers to do predictable, safe, and hyped science. On top of that, grants are usually short-term (3-5 years), which means that scientists are less likely to apply for long-term projects, even though these are usually the ones that create the biggest discoveries. All this pushes scientists to submit repetitive, short, safe studies.

Medical researchers are judged by the research they publish, and they have tons of pressure to get certain types of results. If you get good splashy results, it will be easier to get published in a prestigious journal, but if they get mediocre results, many scientists consider presenting the data differently to keep it exciting. “The consequences are staggering. An estimated $200 billion — or the equivalent of 85 percent of global spending on research — is routinely wasted on poorly designed and redundant studies, according to meta-researchers who have analyzed inefficiencies in research. We know that as much as 30 percent of the most influential original medical research papers later turn out to be wrong or exaggerated.”

There might be a “crisis of irreproducibility”, a survey made by nature.com about reproducibility (1576 researchers) concludes that “70% of researchers have tried and failed to reproduce another scientist’s experiments, and more than half have failed to reproduce their own experiments.”

On top of that, studies that fail to replicate results from a “good” study might not get published, thus creating bias in science (rejected publications may have value). Some causes could be a lack of understanding of statistics, poor experimental design, lack of mentoring from senior researchers, fraud, hyper-competition, lack of resources, or simply selective reporting of results.

A lot of the science and research is locked away and not easily accessible. They are often costly to access and can be hard to find. Many Researchers have argued that academic research should be free for all to access, as many for-profit publishers actually slow down the pace of science. One article in a scientific journal can cost you 30$, some yearly subscriptions are 300$ and up to 10,000$. On top of publishing fees paid by the research team.

Science is slowed and locked by intellectual property: 

*This will be the longest section as it is arguably the most important thing to change in the way we do medical research.

Protected patents are a relatively recent invention, the first modern patent system was created in 1474  in Venice, and it has since evolved into a complex set of laws and regulations, both at the local and international levels. Despite the fact that patents are intended to promote innovation and progress, their impact on the development and access to life-saving drugs has been a subject of increasing concern. The current patent system, which grants exclusive rights to pharmaceutical companies to produce and sell drugs, has led to high medicine prices, limited the scope of research, and limited access to care for many people, especially those in developing countries.

Is the right to intellectual property or Human rights more important to you? I believe that patents should not extend so far as to interfere with individuals’ dignity and well-being. Where patent rights and human rights are in conflict, human rights must prevail.

The current system allows pharmaceutical companies to patent new drugs and prevent other companies from manufacturing and selling generic versions of those drugs for a fixed period of time, usually around 20 years. This gives the patent holder a monopoly on using, producing, importing, and selling the drug, which allows them to charge high prices to recoup their research and development costs and make a profit.

It also prevents researchers from sharing their ideas and promotes wasteful practices. Ironically, stronger patent protection may even lead to less innovation. When patents expire, drug companies frequently sue competitors to prevent them from selling cheaper generic versions. The European Commission estimated that these legal battles had cost the EU €3 billion over an 8-year period.

Before the mid-1990s, pharmaceutical product patents were not permitted in many developing nations (India is a huge example). This decision was often a deliberate policy choice, based on the belief that the advantages of low-cost access to medication outweighed any potential negative consequences resulting from the absence of domestic patents on multinational companies’ research and development decisions. However, since the World Trade Organization’s adoption of the Trade-Related Intellectual Property Rights (TRIPs) agreement in 1995, all countries have been required to allow pharmaceutical product patents. TRIPS has been controversial, as it can make it difficult for developing countries to produce or import affordable generic versions of patented medicines. According to the World Bank: “Nothing is more controversial in TRIPS. […] Many developing countries see little potential benefit from introducing patents. In contrast, potential costs could be significant.”

“Like a poorly conceived new drug with deadly side effects, the modern medicine patent regime is a relatively recent innovation and, not a good one.”

Overall, the flaws are: 

1. Patent monopolies allow pharmaceutical companies to charge exorbitant prices for essential medicines. This can make them unaffordable for many people, particularly those in developing countries who cannot afford to pay high prices for life-saving treatments.
2. The high cost of drug development is often used as an argument to justify high drug prices, but the actual cost of drug development is often overstated. Pharmaceutical companies often spend more money on marketing and lobbying efforts than they do on research and development. Independent analysts have estimated the cost of developing a new drug to be significantly lower than the industry’s claim of around US $1 billion, and the Drugs for Neglected Diseases Initiative (DNDi) believes they can develop a new drug for $110 million to $170 million. These costs include a theoretical expense for failed projects. Ultimately, drug prices do not reflect research and development expenses but rather what heavily subsidized “markets” are willing to pay. Making private insurance more expensive, as well as government-supported healthcare thus wasting tax money.
3. Pharmaceutical companies can extend their patent protection by making minor changes to a drug or by obtaining multiple patents on the same drug. This practice, known as “evergreening,” can extend a drug’s patent protection for years and prevent the development of generic versions. The strategic value of patents has expanded beyond their role in promoting innovation. Even if a patent does not generate revenue, it can still be highly valuable for its strategic benefits. Using a patent as a blocking strategy is common practice
4. The current patent system does not incentivize the development of medicines for neglected diseases that primarily affect people in developing countries. This is because there is often little profit to be made in developing treatments for these diseases.

Must read papers to understand the cost of patents: “Deadly gaps in the patent system : an analysis of current and alternative mechanisms for incentivising development of medical therapies.” and “Are Patents Really Necessary?”

It is an open-source protocol for medical research without intellectual property. It aims to create an alternative funding solution for medical research while removing patents. Researchers are financially rewarded throughout the process of research, and all solutions found within Etica are immediately available for anyone to use. Open Source has already proven to be faster and more efficient in many other fields like Software development (such as AI research) and can fundamentally change how we do medical research.

Grant proposals are grouped by disease on Etica.io, and then users (holders of ETI) can vote and get rewarded for correctly participating. In the long term, Etica.io will be only one of potentially thousands of websites connected to the Etica blockchain. Potentially, instead of having science locked in journals with paywalls, we could have websites directly connected to the Etica blockchain, without restriction and free of patent. To that extent Etica blockchain can be called a permissionless decentralised science journal.

• The big money problem: Etica provides a new additional decentralized funding system for medical researchers to use. We are not naive, most people will act for their own interest. Good and evil people will come to Etica but what is different is that Etica is not under the control of the incumbent of the system that chooses the pace and direction of research according to their vested interest.
• Poorly designed studies, and reproducibility: It will be important for the community to select quality and not flashy research. In fact the token holders have a collective interest that Etica maintains its value. If the network globally accepts useless proposals then the network is going to become worthless. A key part of the Etica system is that the token holders have a responsibility to get the best proposals rewarded so that people keep increasing the amount of work they do for each proposal and create a healthy open-source ecosystem.
• Paywalls: All Etica proposals are public and free to read, uploaded on the IFPS network, as well as easy to access.
• Intellectual property: Etica removes intellectual property which is costly to medical research and human rights.

Etica enables people to “donate” / invest money in open-source medical research. You can earn rewards by deciding what will get funded, and it is always possible to cash out ETIs. The current model is funded by the government (taxes, public health insurance) or private insurance often colluding and price-fixing with pharma companies funding mostly useless overpriced science. We are currently paying taxes, or insurance to solve hair loss problems, instead of actually saving lives. With Etica is possible to self-fund open medical research, all while protecting your money in a low-inflation asset.

We at asterisk are working towards a global initiative which provides womxn from every background the means to directly contribute their experiences to research. These disease-specific data lakes will sort data by location, age, menstrual cycle phase, contraception (if any), and more. This will combat the current shortfall found in traditional research methods and provide insight into the effect of menstruation and contraception on female-biased disorders and their treatment.

Our initial project will tackle the lack of female representation in Obsessive Compulsive Disorder (OCD) research. OCD biases toward womxn 2:1 and is an excellent entry point due to the large amount of research and funding already present. Thanks to the wealth of research it is easy to see the gap in OCD research specific to womxn. By identifying these gaps in research we are able to tailor our OCD platform for the development of female-specific data lakes.

We hope to use this initial model to explore other disease states which bias toward womxn and are critically underrepresented in research.

In the 1970s, women were banned from clinical trials in the United States. Between then and 1993, when US Congress mandated women be included in trials, most of the drugs we utilize today were researched and patented. We are working to address the lack of female-specific data for OCD, including medication side-effects, by building a portal through which participants can enter their symptoms and treatments. We utilized Sepolia and ZK proofs for privacy, Proof of Passport to verify humanity and female-only data, and React to build a comfortable UX for non-Web3 native users. As a result, we are building the first female-specific healthcare data lake.

We deployed on Sepolia for low costs, privacy, and scalability. We use a transaction relayer for the proof submission so that users don’t need to maintain two accts to remain anonymous, which could have put them at a risk of doxxing themselves. On semaphore, our contract limits each individual to submit data reports once per day to restrict point distribution (which will someday convert to tokens). The dAPP is gated by Proof of Passport, which limits acct creation by gender (and only one per person).

From there the participant is prompted to complete their profile. We ask questions that, based on our market research, will later help researchers filter the data. These include whether a participant is self-diagnosed, where they are located, if they are on any medications (and which), age, ethnicity, and whether they would like to be approached for other studies.

A participant can return to their profile at any time update their diagnosis, medication, and other changeable characteristics.

Finally, the participant is brought to the daily check-in screen for the first time. The daily check-in is designed to feel as simple as a daily menstruation app check-in. The participant will receive reminders to log in and submit their symptoms daily, and receive points for doing so.

Our next step is to further develop the participant prototype into a workable app for Beta Users. During the participant beta test, we will then develop the backend from which researchers and aligned organizations can sort and access the data.