Personalized Medicine in the Web 2.0 Era
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Bertalan Mesko, Webicina.com.
There have been huge developments in the field of personalized medicine in the last few years but the major problems we have to face have just now become clear. People are ordering direct-to-consumer genetic tests from home; they expect general practicioners to answer genomics-related questions that might affect their health management or lead to medical decisions, and they are publishing information that should never leave one’s computer.
Educating medical professionals and preparing the public to be able to provide informed consent for these activities is crucial to this next phase; as is the accessibility of the enormous and growing amount of genomic data. A new generation of web services, the so-called web 2.0, seems to be playing an important role in this movement. Through such tools, people can interact with their doctors and each other easily and they can share the results of genomic tests, resulting in a self-maintained database of human genomic information. Examples include the research project of 23andMe.com or the amyotrophic lateral sclerosis research of Patientslikeme.com.
The main challenge to personalized medicine over the coming years is to find a way to combine these pieces of information with a public library of scientific findings in order to create a comprehensive clinical database of genotype/phenotype associations. We must also make it easier for patients to access reliable websites focusing on personalized medicine and help medical professionals understand where and how they can locate clinically relevant information about new therapies or diagnostic tests, because it is all too easy for patients and even researchers to become lost in a cloud of scientific publications, without mentioning language problems.
By involving web 2.0 tools such as secure communities, new communicational channels of social media or collaboration-based sites, personalized medicine may soon achieve its rightful place in the global medical palette.
[...] in Genome, Personalized medicine, Web 2.0. trackback A few weeks ago, Daniel Vorhaus from the Genomics Law Report asked me to provide a commentary on what I think about the future of personalized medicine [...]