A thorough discussion about personal genomics — what it means for the average consumer, the health care system, and the research community often raises more questions than it answers. While the public discourse on genetic privacy can be traced back to the days of the Human Genome Project, only recently has a new era been ushered in thanks to the steady decrease in the cost of DNA sequencing with promises of a tailor-made approach to medical treatment and new discoveries from rich genetic data sets. Depending on whom you ask, personal genetic information should either be protected at all costs as personal property or is merely information fit to published online for the whole world to see and contains nothing more revealing about health than, say, the knowledge that someone smokes.
That there is such concern over whether genetic information is more vulnerable to attack or misuse than traditional personal health care records may be an unintended consequence of the hype that touted personal genomics as a means to discover all there is to know about a person. “We’ve done it to ourselves. The way we were selling this idea of genomic data providing much better insight into who you are, and your future, than all other types of data it was very effective and we really meant it,” says Misha Angrist, an assistant professor at Duke University’s Institute for Genome Sciences and Policy. “However, until we find all that dark inherited matter that we haven’t identified to date, most of our genomic signals are not nearly as disclosing as knowing your health risks because you’re a smoker. But you can imagine that if one wanted to be a bit worried about the health care system, having a whole community saying that we’re going to [be] developing the preeminent disclosing data source, people who were likely to get scared were going to get scared.”
During the first few months of 2011 alone, advocacy groups like the Forum for Genetic Equity, concerned citizens, and a handful of state representatives began efforts to protect personal genetic information. In January, a group of Massachusetts state senators introduced the Massachusetts Genetic Bill of Rights in an attempt to make up for perceived shortcomings of the federal US Genetic Information Nondiscrimination Act of 2008. “This is a new era in medicine and we need to make sure that [there are] some sort of safeguards. We thought it would be important to deal with this quickly, rather than at some future time after perhaps people had already lost some of their rights,” says Massachusetts Senator Harriette Chandler, who is a lead sponsor of the bill. “There obviously are issues; the insurance industry is not going to like this because they feel that they want to know any genetic information that the individual has, but what we’re trying to say is that basically genetic information is your property, like any other property you have, and you have a right to privacy with respect to genetic material.”
In March, representatives in Vermont and California introduced similar bills in an attempt to declare genetic information the exclusive property of the individual, among other protections. These bills face many hearings and debate sessions before having a chance of being enacted into law, but the movement is expected to spread across the country.