Sunday, September 16, 2018

Ethical concerns rise as technology for genetic testing increases

The search for the Golden State Killer, a man who was said to rape women and kill at least 12 people in the process in the 1970s and 1980s, had officials lost in knowing who had committed the crime. Investigators decided to test DNA samples found at the scene of the crime against data on GEDmatch, a website run by volunteers who have already had their autosomal DNA  tested from other DNA testing organizations where they can upload their genetic information to do things such as find relatives, compare DNA, and have admixture reports done. After running these genetic tests, investigators were finally able to determine the identity of Joseph James DeAngelo. The use of this website was beneficial in this situation, but also raised various ethical concerns about the privacy of customers in respect to their DNA.

This graphic depicts the workings of GEDmatch. 

This raised concerns from major genetics testing companies, such as Ancestry and 23andMe, who adopted a new set of guidelines about how and when they would share their customer's DNA results. Under these new guidelines, users must firs consent to the companies to allow them to share their genetic information. In turn, these new guidelines do not cover data that is often used in medical research. Individuals fear that if this genetic information were to get their hands on the wrong information, that it could result in discrimination based on genetic diseases.
Currently, a combination of federal and state governments help to determine the laws in regards to genetic information and testing. The major laws in place right now include the Genetic Information Nondiscrimination Act, which allows individuals the right to not face discrimination from insurance agencies and jobs in regards to their genetic health and the Health Insurance Portability and Accountability Act, which allows genetic information to be safe in regards to health care providers. None of these laws apply to those testings done by the individual however.
Personally, I think that steps need to be taken in order to protect the consumers in regards to their own genetic information. Firstly, there needs to be education on the consumers part as well about how important and private their own genetic information should be. Genes are the most private thing to a person, in the same way that one would not give out their own Social Security Number to anyone. An individual's genome holds so much information about their health and well-being. However, most individuals seeking an at home genetic test are doing it for superficial reasons (i.e. ancestry or racial backgrounds) and while all that is interesting to know, these individuals do not know that their entire genetic background is stored somewhere permanently, and without reading the Terms & Conditions from the genetic testing company, they do not know if their information will be kept secure or be shared with other third-party companies. Genetic testing and technology is increasing and I believe that there needs to be a solution in order to keep the individual safe. 

1 comment:

  1. Good thing you posted this. I was very tempted to try 23 and Me, but after reading this, I don't think I'll be doing that. I agree that safety of the individuals are imperative.