Medical information is no longer stored in big binders in doctors' offices - instead it’s stored on internet servers for easy retrieval, manipulation and increased efficiency. If your family doctor orders drugs, the pharmacy has access to your personal and medical information in addition to your insurance information. If the doctor prescribes further tests, the lab has your test information plus your personal information. If you have to go to the hospital for some reason, the hospital asks for your medical history and your insurance company. Every place you go, your medical and personal history is required. All this information is available to the organizations by few clicks of the mouse.
In order to avoid any misuse of this information, all organizations in Ontario are bound by privacy laws outlined by the province’s Personal Health Information Protection Act (PHIPA). PHIPA defines “personal health information” as identifiable information relating to an individual’s health and care history. PHIPA prohibits use and sharing of personal health information. But... there is always a 'but' in this imperfect world...we are essentially moving towards an era where we can sequence our genome for a couple of hundred bucks, analyze it and make it part of our medical history...which might be stored on a server. Technological improvements have enhanced both the accuracy and predictive ability of genetic information. In addition to improving the results of genetic tests, developments in computer storage systems have made data more easily available. Data can effortlessly flow and become integrated into other computer databases.
Once the genetic information is out there on the internet it is very difficult to make it unavailable. It's very easy to add a face to a gene sequence. You don't believe me? Well here is an article from the Washington Post about a boy who was conceived through anonymous sperm donation. When the boy turned 15 years he wanted to about his background and his heritage. He took a swab of the inside of his mouth and sent the swab to one of the commercial genetic testing services. The Y chromosome has short tandem repeats which are passed on from father to son almost unaltered. He later decided to further pursue his search and compared his Y chromosome to a database of sperm donors set up by Family Tree DNA of Houston. Today he and his biological father know about each other.
Yaniv Erlich at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts., wondered if this was a fluke or he can replicate this in his lab. In order to test his hypothesis, he did several experiments. His lab came up with an algorithm that is based on the individual’s genetic markers called short tandem repeats which are present on the Y chromosome (males only). The team then searched genealogical databases like ysearch.org. The databases store information in a way that the surname corresponds to their individual genetic markers. The database only provides the last name of the people. Therefore, the team confirmed the correct names by cross-referencing the possible last names with public records of people of similar ages and locations. His repeated experiments lead him to conclude that putting your DNA on the internet can be dangerous.
It is clear that these genetic advances are going to play an ever important role in our lives in the future. Bioinformatics can use all the genetic information for research in the field of drug development, antibiotic resistance, gene therapy and molecular medicine. Also, it gives bioinformaticians the ability to not only compare genes from one human being to another but also across species like with the fruit fly!! This comparison can be at any level- genes, SNPs, proteins, or RNA. Bioinformaticians love this kind of data but this at the same time will raise a host of privacy challenges that we are only beginning to understand. Genetic information holds more informational value as opposed to regular medical history. The information may be predictive of genetic predispositions that would otherwise be undetectable. The information may have a significant impact on the family, including offspring and group. The significance of the information may not be necessarily understood at the time of testing.
If an employer knows that an employee is likely to be diagnosed with cancer, the employer might not want to retain that employee. Similarly, a person who is known to have a high risk for a genetic condition may have difficulty obtaining insurance because he or she is likely to run up medical bills that would be costly to the insurance company. Because we cannot control our genes, it is unfair to discriminate against a person's genetic predispositions. In 2008 the Genetic Information Nondiscrimination Act (GINA) was passed into federal law in the U.S. With all the above mentioned concerns a lot of people don’t want to undergo genetic testing even if it is advisable by a physician. GINA is a strong and essential first step in the fight against genetic discrimination and misuse of medical information. GINA not only helps against health and employment discrimination but also ensures that biomedical research continues to advance and people have the peace of mind when undergoing genetic testing. However, Canada does not have equivalent legislation.
Speaking of genetic testing, there are tons of private companies that have come up recently. They make some very interesting arguments about what our genes can tell us... and that shall be a topic for my next blog.