We know the ability to collect and analyze a person’s DNA to identify and potentially treat inherited medical conditions is a relatively recent phenomenon in the spectrum of medical history. While genomic science and research (which represents the more complex interaction of genes and the environment vs. study of particular genes alone) is now at full-speed, ethical concerns and issues have followed a parallel track. As the field advanced, many experts inside and out of the scientific community have questioned how genetic data would be used and whether it would adequately inform the medical community towards the best ends possible for patients. For all intents, the community has accepted that genomic medicine can exponentially improve human health, but the conversation about its social impact continues.
In 2016, the National Institutes of Health (NIH) announced it would offer four new grants specifically to study the ethical, legal and social impact of genomic sciences through the National Human Genome Research Institute’s Center for Excellence. “The projects will examine the use of genomic information in the prevention and treatment of infectious diseases; genomic information privacy; communication about prenatal and newborn genomic testing results; and the impact of genomics in American Indian and Alaskan Native communities” in the United States. When you widen the genomic medicine lens globally, the issues become even more complex, bringing socioeconomics, politics and culture into the picture. The World Health Organization (WHO) has recognized the intersection of global health and genomic medicine since the 1950s (Gibbon, Kilshaw & Faulkner, 2017), and now reports that low to middle income countries account for 92 per cent of global burden of disease.
In part, concerns around genomic medicine globally involve how and where data is collected, how it is analyzed, and also how it contributes to prevention and treatment in equal measure across global communities. One step further is the core question of ownership — does the medical community or individual own the DNA data collected? Privacy concerns discourage contributors to the data pool, methods of generating this information tend to draw from limited populations, and weak compensation plans keep those intrigued from participating at all. These questions and concerns have helped shape Shivom’s mission of creating secure storage and collection of DNA data and giving data donors the absolute control to share their information with the global healthcare community. It is with well-established ethical and social issues in mind that Shivom aims its programs toward the advancement of global healthcare, applying its technology towards secure analysis of big data.
To create a truly positive impact on global health, you need to have access to big data. However, data samples are not created equal, and even many large sample pools do not contain significant contributions from under-represented communities that have a high incidence of a particular disease. This lack of data leaves these groups out of the equation, and by extent, leaves the problem unsolvable. To address this challenge, Shivom has begun the process of collecting samples of the most diverse data available by reaching some of the most remote areas of the world, particularly focusing on previously underrepresented populations. In more technologically advanced and developed societies, people can upload their own data on our platform. Ultimately, more DNA data leads to better biomarkers of disease, which creates more effective drugs for a wider range of patients and successful clinical trials. Pharmaceutical companies can make use of the DNA sequence sets to drive their R&D pipelines and develop successful and unique drugs based on individual genetic backgrounds.
By combining voluntary, in-the-field data collection with innovative technology and global focus, Shivom is committed to fulfilling its mission of advancing global healthcare in a socially responsible way. Reaching underrepresented communities, particularly many of those that make up the majority of global burden of disease is one of our top goals. We think it’s important to allow larger groups across socioeconomic categories to contribute and control their data because we believe that the positive social implications outweigh the negative — whether that be regarding the secure storage of data collected, the ethical use of data towards medical breakthroughs or simply an individual and physician’s knowledge of DNA markers that help inform them of the best prevention methods for certain medical conditions. Read more about the NIH’s take on the impacts of genomic medicine on global health.