In 2013, the FDA put a stop to 23andMe from providing customers with information about their genetics due to it being risky and inaccurate. They said that for them to continue their direct to consumer genetic testing that the companies procedures would have to be regulated. Yesterday, the FDA gave 23andMe the permission to disclose information about an individual’s genetics based around 10 disease.
23andMe started in 2007 with a promise to tell you about your calculated chances of being diagnosed with particular diseases if the environmental situation was just right. This included things from baldness all the way to Huntington’s disease; an inherited disorder which results in the deterioration of brain cells. As the company continued to grow, there was even an attempt of being able to determine the potential children that a couple may have depending on their genetics but this was shut down quickly with the fear of designer babies and associated risks. They current provide information on your heritage based on particular genetic markers and now that brings us to the current approval that they’ve just been given.
The FDA has given 23andMe permission to disclose to “patients” if they have genetics makeup associated with the following disease:
- Celiac disease – inability to digest gluten
- Parkinson’s disease – disease of the nervous system affecting movement
- Late-Onset Alzheimer’s disease – disease of the brain affecting memories
- Hereditary Haemochromatosis – inability to metabolise iron
- Hereditary Thrombophilia – clotting disorder
- Alpha-1 Antitrypsin Deficiency – increased risk of liver and lung disease
- Factor XI Deficiency – clotting disorder
- Early-Onset Primary Dystonia – movement disorder resulting in uncontrolled movements
- Gaucher Disease Type 1 – tissue disorder
- Glucose-6-Phosphate Dehydrogenase Deficiency – blood condition
The reason why these 10 genetic diseases were allowed to be disclosed to consumers is because there is a lot of evidence to support that the presence of particular genetic markers associated with these diseases has a high chance of you developing or being able to pass the disease on. One of the main issues with disclosing this information is how the general public is going to read into it.
Both the FDA and 23andMe have warned people who take the genetic test is to ensure that they don’t make any drastic and sudden changes to their lifestyles based on the information. However, they said that this can be used as additional information to provide to a healthcare professional to make collaborative decisions on the individual’s lifestyle and changes that could be made to manage their health. The $199US spit test will be available in May testing for Alzheimer’s, Parkinson’s, thrombophilia, alpha-1 antitrypsin deficiency and Gaucher’s disease with information on the other disease being disclosed to consumers later on in the year. I’m just wanting them to tell me what mutate power I have.
What do you think about such information being disclosed to the general public? Do you think information on your genetic predisposition to diseases is fair to know so you can make lifestyle changes? Or would prefer to not know? Let me hear what you think!