Tuesday, April 12, 2016

Uninformed Genetic Superheroes

During the formation of a person in the womb, genes combine and cross over to create the person who is born 9 months later. These individuals cane have different eye colors, hair colors, sizes and shapes because of mutations in the genes while chromosomes divided and multiplied. But sometimes, mutations are not just a variant of eye color or skin color; instead, the changes are on the inside in the form of allergies or protection against certain disease. In the case of the 13 individuals mentioned in this article, their genes protected them from illnesses that in any other person would have killed them at an early age, but the 13 people are still alive and very healthy.

Scientists for a project entitled the Resilience Project found these people while gathering data from the 23andMe genetic testing company. This data was found in the form of spit sent to the company to determine what part of the total human genome the particular genes belonged to. Out of over half a million studied genomes that the company has collected over the years, only 13 of those people showed any protection against deadly diseases; they were "resilient", and that was what formed the Resilience Project in the first place.

Logically, these people would be contacted to have their genes studied more closely, but the problem of consent arises when it is taken into account that, despite many people saying that their data could be used for research, taking part in a study that they did not sign up for is both a hassle and a stressor. This informed consent is difficult to come by, as companies that collect data typically have a policy that the people who send in data are not to be recontacted in the future except to see the results that they sent in for. Even if the people who tested positive for resilient genes were to be recontacted, getting everyone together for a study would take time and energy and supplies that the project does not have at the moment.

The study is poised to start when both consent can be obtained from these individuals and there are more of said individuals. The entire project sounds incredible and it could really help out a lot of people if the individuals were able to contribute. With genetic information like this, cures and medicine could be created that, given to the world, would be beneficial to a high degree.

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