As a bonus question on their final exam, I asked my intro biology students whether or not they would want to have their genome sequenced. The question was:
It is already possible to get your whole genome sequenced and it wont be long before it becomes a routine part of your medical care. Having your genome sequenced can potentially reveal information like increased or decreased susceptibility to specific viral diseases, relative likelihood of developing diseases like Alzheimer’s or Huntington’s disease, or reveal your MHC alleles (which can influence mate choice). Given the opportunity, would you, right now, want to have your genome sequenced? Explain why or why not.
23 students said they would want their genome sequenced, only 6 did not. What I found most interesting is that those in favor and those against often gave the same reasons, it was simply a matter of perspective on whether they viewed it as a positive or negative thing. Here are the common reasons given for wanting to know your genome sequence:
1. Want to know more about family ancestry
2. Finding out about the relative risks of developing certain diseases, so that you can be prepared or do something about it to reduce your risk. In some cases a family history of disease was seen as more reason to know more about your own genes.
3. Curiosity – wound’t it be cool to know?
4. Wanting to give children the best possible chances. Knowing the risk of passing on a genetic disease to children was seen as an important factior in deciding whether or not to have children. Knowing whether a potential mate had “good genes” was also seen as important, or if the combination of genes might be beneficial or detrimental (such as ensuring heterozygosity at the MHC locus). Some saw this as getting an upper hand on natural selection.
Those who did not want to have their genome sequenced:
1. Not wanting to know their relative risk of developing specific diseases. Knowing this could impact the way you live your life in negative ways like worring about diseases you may or may not develop and for which we can do little or nothing to alter its course. A family history of disease was in some cases seen as more reason to not want to know.
2.Do not want genetics to influence importnat decisions like choosing s mate or the decision on whether or not to have children.
3. Privacy and insurance problems. Not everything has been worked out yet with respect to storing or diseminating genomic information, or the laws regarding use of that information by insurance companies. Untill they can be sure that the information will remain private and won’t be used to deny insurance, many thought it safer to wait.
There are obviously many resans for and against genome sequencing, much of it comes down to personal views. However, I think a critical question to consider is what you you really want to know from your genome sequence and will it actually be able to tell you what you want to know? What would do with the information if you had it, what changes or choices might you have to make?