Harry Glorikian Senior Executive, Board Director, Consultant, and Author
Your genome has huge implications for you and your children and needs to be securely stored.
What’s more valuable than your money, equally vulnerable, and unique to you? Answer: Your genome. And just like your money, your genome should be stored securely as possible and those institutions that store your genome should be regulated on how they store it, use it, and potentially share it.
As medical science advances, it’s going to be increasingly important for people to be able to control and manage access to their personal genomes. To make this possible, we need to establish a formal, well-regulated system of genome banking. Just as the government regulates the banks that hold our money, we must also have it or an equivalent group/system to govern how institutions manage our genomic data. Because it is only by guaranteeing the security and use of that information that we will be able to exploit the full potential of the growing pool of genomic data for the betterment of the individual and for mankind.
Everyone’s genomic data, after all, is potentially life saving and life changing. We’ve long known that each of us has a unique string of three billion or so tiny molecules linked together in our own genetic code. That code governs much of our health and well being. It dictates the color of our eyes, how tall we can grow, our relative risk of developing cancer, and much more. Your genome also has big implications for your children and other members of your family. If a family member develops an inheritable disease such as breast cancer or Huntington’s, the information in your genome could be crucial to determine if other family members are also at risk. Think of this as the estate you pass on to your heirs.
Craig Venter was recently quoted in a Businessweek article saying ? “It’s going to be important to know what the variant is you got from your mother and from your father, and whether that correlates with 30 other variants across the genome that are associated with susceptibility for a certain type of cancer, for example.”
Genomic data is also becoming increasingly important in medical research. Studies of Alzheimer’s suggest that one reason so many clinical trials have failed so far is because the studies need to be done in people with earlier stage disease, which is currently very challenging to detect. In the future, it’s likely that people whose relatives have the disease will be able to get a simple blood test that will help estimate their own risk. Additional studies will then be used to select optimal candidates for early stages trial of new Alzheimer’s drugs.
But there’s also a dark side to genome sequencing. Hackers can sneak into databases and determine the owner of an “anonymous” genome using DNA identifiers. They can also uncover previously unrecognized sensitive information about someone’s genome, or unmask areas that researchers have attempted to keep from public view.
In probably the most famous example of this, James Watson (the co-discoverer of the DNA double helix) made almost his entire genome public in 2007. One gene—APOE, which helps predict risk of Alzheimer’s disease—had been masked before Watson’s genome was published. However, several geneticists said they could tell whether or not he carried the gene, based on other mutations that are commonly inherited with APOE. No one publicized his APOE status, but it became clear that publishing your genome could entail risk to your privacy.
Then in January 2013, a researcher at Massachusetts’ world-renowned Whitehead Institute tracked down five people who he selected at random from a DNA database. Using just their DNA, ages, and the states where they lived, in a matter of hours he identified the five as well as some of their relatives.
Such stories are unnerving to many, who worry that insurance companies or employers will use genetic information to discriminate against them. Even though it’s technically against the law, this is a widespread fear.
Some experts claim it’s time to simply accept that we are in a genomic era, and that will entail some risk to privacy. They are encouraging people to donate their DNA to large public databases so that we can more rapidly advance genomic testing and diagnosis. But for those who are not comfortable sharing their data (whether public or private unregulated entities) there should be an alternative that doesn’t involve simply trusting that our data will be safe. We should be able to have a guarantee that our genomes will be safe and managed according to standards. As we have done in the past—you can store you money in your mattress or you can choose to store it in a bank that is regulated and must abide by guidelines.
The system I am suggesting is one that would set up firm rules for how genomic data is stored, used, and transferred/loaned between institutions, just as we have rules for transferring money. Once those system and rules are in place and have been widely communicated, more people will trust the system. With greater confidence in the system, more people will start to participate and we can finally enter a truly genomic era that can profoundly affect the future of humanity. My challenge to lawmakers and policy makers is to not look at this area as something that is managed by researchers but something of significant value to society that affects every human being on earth. And if that is believed to be true—then this valuable asset should be rightfully standardized, regulated and managed to create a system that benefits all individuals both here and abroad.
Harry Glorikian (firstname.lastname@example.org) is a Senior Executive, Board Director and Consultant in the life sciences/healthcare industry.