Since I was very sceptic about DNA donation in my last post, I wanted to find out more about possible advantages .
DNA donation can actually be a huge opportunity for medicine and research. A lot of DNA donors want to help science and contribute to the development of medical insights. That was also Peggy Cox‘s intention. She is one of the volunteers and has multiple sclerosis.
“We need more effective treatments and I don’t think those treatments will be forthcoming until we know more about the genetics of MS”
The volunteers hope to help finding more effective treatments, therapies and prevention strategies and to support science. Short: DNA sequencing gives people the opportunity to be part of medical history.
One of the companies is DNA Sciences of Mountain View, California, which could start studies on cancer thanks to a huge amount of volunteers.
Other companies and projects, like for example the Stanford university School of Medicine Researchers, could also make huge steps forward thanks to DNA sequencing. Companies can match volunteers to specific research issues. Therefore, researchers can work with groups that exactly fit to their aims. This increases the chances for successful studies. Intrexon Corporation also argues in favor of the improvement of human health and explains:
“Our Better DNA™ approach seeks to facilitate new treatment modalities that provide breakthroughs in therapeutic efficacy and safety.”
Untill now the identities of the donors were kept separate from their DNA sequences in order to gurantee genomic anonymity. One of the database companies argues that the information is stored in offline-databases and therefore not accessible via the internet.
Genomic Anonymity? Endangered!
Actually the information you donate should be save. Well, not anymore. Researchers of the MIT were able to identify anonymous DNA donors and their family members by using only publicly available data. They analyzed genome sequences, family trees and identified specific markers on chromosomes. Then, they cross-referenced those with the databases and could thereby identify the surname which belongs to the DNA. The surname gives you a vast amount of further information and if they found out a surname, age and state, they got a very good identifier. Interested in a detailed description of the method? Click here.
Lead researcher Yaniv Erlich, sums up:
“ ’Basically, we show that you can take whole genome sequencing data that is posted online and cross-reference it with public genealogy data to infer the identity of [an ostensibly anonymous] donor.’ And you can do it with Google searches.”
This study shows how vulnerable private, genetic data is, if people use publicly available information. Google already reported that they worked with Craig Venter, who is one of the first scientists who sequenced genomes.
“Over time, Venter said, Google will build up a genetic database, analyze it, and find meaningful correlations for individuals and populations.”
In the begining of my research I was surprised how many advantages DNA analysis actually has. Helping science sounds great. However, those advantages where overshadowed by new insights in the field of genome sequencing which endanger privacy and again bring up ethical issues. This unfortunately brings me back to my concerns from the last post.
I would like to finish my post quoting Erlich, who correctly concludes:
“We are living in a brave new world […] [,] a world where more information than ever is readily available online. […] What happens to this information depends on who’s making use of it. In the hands of a scientist, it can be used to study, treat and cure diseases. In the hands of Facebook, it can be used to create powerful new search engines. In the hands of a criminal, it can be used to commit identity theft.”