From DIY to DNA matching: how human genomics is transforming society – The European Sting – News and reflections on European politics, the economy, foreign affairs, business and technology

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This article is brought to you thanks to the collaboration of The European Sting with the World Economic Forum.

Author: Clarissa Rios Rojas, Member of Geneva Security Policy Center

Do you want to understand the role of your DNA, genes and genomics in business? Would you like to know who the big players in this new field are and how they affect you and society? In this article, I will explain how technological advances in genomics have also made human genomics affordable and accessible to the general public. Social movements such as do-it-yourself biology, companies offering gene therapy and personalized genetic testing, as well as companies working at the interface of genomics and artificial intelligence, Cloud computing and blockchain have partnered with academic researchers to reinforce our knowledge in this innovative field. .

And where are the citizens in this cycle? Are they the consumable or the final product? Here, I would also like to describe the different stories used by companies regarding the role that citizens play in this large-scale change.

In the past, markets targeting companies working in the field of human genomics were the university sphere (universities, research institutes) and pharmaceuticals. Over the last decade, a new target audience has emerged: the general public. This has been facilitated by lower prices for molecular biology techniques capable of reading complete genomes at around $ 100. Many new and old businesses, including start-ups, have taken advantage of this opportunity: By 2022, the genomics sector is expected to become a $ 24 billion industry.

1. Gene therapy: The advancement of science and new molecular biology techniques allow large pharmaceutical companies to edit (modify, replace, change) the defective genes of patients. It is important to note that some of these companies state that procedures are only performed on somatic cells (any cell in your body that is neither an egg nor a sperm). This disclosure is important, particularly in light of the global controversy surrounding gene-modified embryos in China.

2. Genetic testing directly to the consumer (DTC-GT): Companies in this sector usually ask their clients to send a saliva sample from which they can extract information on various topics, such as their susceptibility to certain diseases, their badociation with specific abilities, the comparison of their genes with those of a professional. sportsman, what should be his diet, his exercises and cosmetics, what types of clothes they should wear … and even that could be their ideal partner.

3. Equipment and reagents for do-it-yourself biology (DIY bio): These companies focus on selling products to non-experts to conduct genetic engineering experiments at home. Some products contain gene editing tools to perform experiments on small animals, while others can be used directly on humans.

4. Purchase and sale of genetic data: Some DTC-GT companies sell genetic information from their customers to pharmaceutical companies, who will then use it to research a large amount of genetic data.

Yes. As we enter the fourth industrial revolution, this should not surprise us. Nowadays, the field of human genomics incorporates other technologies, such as:

Blockchain: Given that some of the aforementioned companies (# 4) are already selling genetic information from their customers, others have emerged to give the public the opportunity to sell their own DNA data via blockchain. Through this system, customers receive a DNA token (a new cryptocurrency) in exchange for selling their genetic information online.

Cloud computing: Large technology companies such as Apple, Amazon and Google offer services to store the petabytes of genetic data created online. There are also other small businesses that use this storage system to provide services (for example, hospitals that want to store and manage the genetic data of their patients).

Artificial Intelligence and Machine Learning: Big Pharma uses AI and machine learning to thoroughly badyze thousands of molecules that may become future drugs. This compares favorably with traditional methods that require more human capital and many hours of laboratory experimentation.

Most companies respond to the individual needs of citizens through attractive perspectives such as personalized preventive health care or tailored disease treatment. Other companies focus more on entertainment and promote stories that interest citizens interested in knowing their roots and ancestors, understanding their own personalities, obtaining cosmetic products or personalized diets to improve their health and even to understand the behavior of their animals. Companies working at the interface of human genomics and artificial intelligence point out that scientific data is too large to be understood, making it the most effective way to accelerate scientific discoveries . Finally, bio-DIY companies target the public by popularizing the idea that they democratize science.

For more than half of these new businesses, the target audiences are the citizens and, through the use of powerful social media and marketing campaigns, they can reach a lot of people around the world. In the Omics in Society Report: Social, Legal and Ethical Aspects of Human Genomics, we note that the burgeoning human genomics sector has opened up many opportunities for development, but has sometimes ignored ethical and social considerations. legal. It is imperative that we engage non-scientific groups in this debate to discuss moral issues such as:

– Lack of international guidelines and quality control of DTC-GT companies.

– The vagueness surrounding the ownership of genetic data and their confidentiality.

– Edition of genes of human embryos.

– The lack of consistent ethical guidance on DIY bio experiments on humans and other animals.

If we want to include citizens in the political cycle, we must show them the potential social and / or ethical impacts of developments in the field of human genomics. It is here that scientists from around the world should express themselves on these issues and share their knowledge with a wider audience. This is only so that we can open an informed dialogue that will contribute to the co-creation of better policy measures, adapted to these growing technologies.