As testing and vaccination programs continue worldwide, it is also important to bring to attention the longer-term impact of lockdowns and COVID-19 on people. A recent survey done by the Office of National Statistics showed that one million people in the UK were experiencing prolonged symptoms of the disease such as muscle and joint pain, respiratory problems, and heart palpitations, just to name a few.
The post-conditions related to COVID-19 can be understood by studying the DNA alterations made by the virus. Providing genetic information will then help frame better policies and healthcare infrastructure to fight against COVID-19, its variants, and any future, unforeseeable pathogen attack. Sano Genetics, a genetic data-sharing company, does just that.
Taking part in the study
Sano Genetics was founded in 2016 by Patrick Short, William Jones, and Charlotte Guzzo. They aim to reach different kinds of people to gather genetic data for research to create better, personalized medicine. Short expounded on this further, saying that “instead of being a research ‘subject’ or having research ‘done on you,’ you’re actually part of the research process so you can help decide the goals from the beginning and also see how your data is being used and stay in control of what’s going to happen to it in the future.”
The company provides a research-based software platform that matches a registered participant’s genetic profile with the data that is being dynamically collected to find the origin and history of various medical conditions. These include data such as COVID-19, their current priority, and personalized treatment recommendations. At the moment, Sano Genetics has a network of partners that include a number of organizations and researchers of different fields that provide and study genetic data for research.
Addressing long-term impacts
The latest addition to Sano Genetics’ research list is the impacts and possible solutions for long COVID-19 survivors. One of the major concerns for the governments and policymakers in 2021 is the emerging numbers of long COVID-19 survivors. The Long COVID-19 research carried out by Cambridge University and the University of Manchester revealed that the survivors that participated in the research had immunological signatures, which will determine the survival and recovery time against COVID-19.
Sano Genetics asserts that if a person’s immune response to COVID-19 is studied on a genetic level, the answers to the global pandemic crisis may just lie under our skin. They further explained that studies have shown that an atypical inflammatory component of the immune system’s response to COVID-19 suggests the predisposition of some people to have severe COVID-19 symptoms from the outset. They stated that “such early evidence of inflammation suggests immunopathology may be inevitable in some individuals, or that preventative intervention might be needed before symptom onset.”
Last April, the company surveyed more than 20 participants, who had participated in the 100,000 Genomes Project, initiated by the National Health Service in 2003, and other genetics research studies. The accuracy of genetic testing differs between ethnicities, which is considered a major issue in genetic testing by the company.
Their research fits the description of qualitative research methodology, where the data is not analyzed in terms of numbers. Sano Genetics’ non-numerical type of research helps in framing better summaries on the theories of the data. Their secondary data source is collected from already published or unpublished sources, providing free access to its research participants to get free genome sequencing and analysis.
Sano Genetics’ testing kit provides three types of testing: Genotyping measures 0.02% of the DNA, Whole Exome Sequencing measures 2% of the DNA, and Whole Genome Sequencing measures 100% of the DNA. As the data set is broadened, it will become easier for researchers to understand if the changes that have taken place in a gene are benign or pathogenic in nature.
With the participants’ feedback, Sano Genetics built an online platform, allowing them to access their unique genetic blueprint or map and their genetic dispositions. They also received funding from Innovate UK in collaboration with Genomics England and Zetta Genomics to develop an online platform for people with genetic conditions and their carers.
Sharing genetic data
The company believes that the medical treatment of a person for a particular disorder or disease, especially COVID-19, should not be generalized, and the medical history should be traced back to our ancestry and shared genes with other ethnicities. With that, a participant will be able to receive an analysis, based on the comparison with other unique genetic codes, once their unique genetic code is uploaded on Sano Genetics’ servers. What’s more, participants may get paid for the time and effort towards the research.
However, Sano Genetics does put out the statement to “Push research forward, on your own terms.” Being a participant means giving consent for the company to share their genetic data with a third party. Participants can choose to withdraw from the research, but the results obtained during the research using the genetic data can’t be undone.
In short, participants “own” their data, but the company owns the results obtained. Participants can opt out of the research at any point. However, if they continue, the information collected from their DNA sample may also be used in future studies. That being said, Sano Genetics’ research towards precise medication would work towards everyone’s benefit in the long run, and you can be a part of that.
YouTube: Sano Genetics, How It Works