Why I have donated my complete genome to mankind

Enlarge picture

Colin Smith, Professor of Functional Genomics at the University of Brighton. UB

A few years ago they determined the complete sequence of my genome, that is, its 6,000 million base pairs . Instead of staying with me, I became the first person to make it available to the public by donating it to the Personal Genome Project in the United Kingdom, an organization run by university researchers. As everyone has access to data, people can contribute to analyzing it in collaboration with professional scientists.I made the donation with "open consent" - a controversial condition - and since then, four other people have done the same. By open consent it is understood that we authorize our personal data to be freely available to anyone and that we do not claim any privacy. The project is not limited to disseminating the sequences of individual genomes, but goes much further by relating the data to personal medical histories as well as information on the characteristics of each and the environmental conditions to which we have been exposed .

This fruitful combination of information is what makes this initiative of the Personal Genome Project unique and dynamic.

Revealing data

The sequence of the human genome can also be considered the digital identifier par excellence, since that of each person is unique. At present, most of the data in this 
respect remain anonymous and, in general, it is impossible to relate them to the personal data of individuals. This, however, restricts its possible usefulness.

The more genomes we can put in relation to other additional information, the closer we are to discover precisely what traits and diseases have to do with which genes. When we know it, the possibilities for medical treatment can be enormous. The find will make possible a personalized medicine in which we can predict diseases and know exactly what treatments each person will respond to. As scientific and medical research does not stop to make this kind of discoveries, in the future they will be able to share with the participants in the projects through updated reports on the genome.

Many top scientists think that it is extremely difficult to keep genomic data anonymous. Although attempts are being made to refine the methods , in some cases the anonymous subjects of scientific articles have been easily identified , often through distinctions such as age, sex and postal code, so we may have to give up to the idea that the data can be perfectly anonymous for all eternity.

Being part of the Personal Genome project has fantastic things. It gives you access to a team of leading researchers in genomics and bioinformatics, and you can receive detailed information about your genome. To me, the report of my personal genome has proved to be very practical, since it has exposed potential risks to my health, some of which I have been monitoring with my GP.

When there are hundreds of thousands, or millions, of participants, we will gain unprecedented knowledge about how the genome influences our health

Another very useful finding is that I have a few DNA variants that prevent me from metabolizing or transporting a good number of drugs. Consequently, I know which ones will not take effect. In fact, one of them could prove to be fatal for me, so it's good to know.

Without a doubt, I encourage people to participate in the program. When there are hundreds of thousands, or millions, of participants we will gain unprecedented insight into how the genome influences our health, our characteristics and our behavior. While we can not predict exactly what we will learn, we are likely to better understand mental illness, drug metabolism, individual human nutrition, allergies, autoimmune diseases, longevity, diabetes, cardiovascular health, and different types Of cancer.

A Thorny Affair

But I am also aware that the sequencing of the genome itself is not for everyone. There are people who simply do not want to know , and who think information will cause them a lot of anxiety. No one should feel coerced in any way to have their genome sequenced.

When the sequence of mine was determined, I discovered that I had a higher than normal risk of an unpleasant and infrequent disease. I began to develop symptoms right away. When, at last, the medical tests revealed that he did not suffer, the symptoms disappeared, which showed that this kind of information can provoke psychosomatic symptoms.

Another issue that may worry some people is the possible use of their data by private companies, including the one they work for or insurers. Although scientists have not paid attention to issues such as the relationship between genes and criminal activity , there are raw data if anyone wants to analyze them. Although insurers are not now allowed to make decisions based on genomic data, there are people who may worry that this may change in the future.

The family is another important factor. At the end of the day, we share genes with our parents and our children, so many people want to talk about them before publishing their genome. Another issue to keep in mind regarding genomic testing is that you may find that one of your biological parents is not the person you thought it was, something that happens in 10% of cases.

I understand that all these considerations can upset many people. In fact, I thought about them all, but I decided that, in the long run, "cautious man is worth two." If you know that you have a high risk of getting a disease, you can act before, for example, by modifying your diet or by requesting evidence from your doctor. For me, this has been the most important reason, as well as donating my genomic and medical data to public benefit.