What if, at your fingertips, you had all the information that could tell you all you needed to know about every disease and/or illness you may contract for the rest of your life? What if that knowledge could tell you how your future generations would be effected? What if you could have your children tested? What if you could possibly change the course of your life? What if….you could essentially play God?
No, I’m not talking about a new science fiction movie. This could all be a very real possibility in the near future. When I was 29 years old I was part of a study that eventually diagnosed me with primary ovarian insufficiency (POI). Currently they are in the planning phase of a study to conduct whole exome sequencing on about 550 women with POI. This is all cutting edge science and the field has not yet come to a consensus on how best to handle the ethical, social, and legal implications of having huge amounts of ambiguous genetic data on individuals.
Truth of the matter is, no disease has ever been discovered or cured without research. There’s no argument that scientific and medical research has to be done continuously. However, when they informed me about this study, my gut wrenched and my mind was racing with a string of questions. This study would be able to tell you pretty precisely not only about your health history, but your future health as well.
What if I could possibly have all the information about every potential disease or illness I could contract for the rest of my life? How could or would this affect Aidan’s life? Would I tell him or get him tested? How would I feel if they were to tell me that something I did in my past (drugs, alcohol, prescription medication, etc.) altered my health and by doing so I caused one disease or another? They say information is knowledge, but is it safe to have that much knowledge when it comes to the course of your life?
Would insurance companies be privy to all this information as well? If so, could they choose not to insure someone for what is essentially then a pre-existing condition if their future says they could develop an illness?
Then again, science isn’t perfect. What if this study tells me that I’m going to get an incurable disease in 10 years and then it never happens? Not only that, but with ongoing medical research, how can they possibly know the disease would be incurable 10 years down the road? Are they then responsible if it turns out that something they told me is inaccurate? With great power comes great responsibility and, truthfully, I think the psychological and emotional implications of having the information of one’s future health could have a worse effect on a person if that information is incorrect.
In short, just because you have some “facts” does not necessarily mean you’re informed, or that the “facts” are useful, or worse, that they’re completely accurate.
I know this blog has posed a lot of questions; unfortunately, I don’t have a lot of answers. Science is fascinating, but nobody has a crystal ball into what our future holds. There are choices we make along the way that could alter the course of our lives, but whatever your faith may be, believe you’ve made the right choices and to be at peace with God, whatever you may conceive Him to be. My only advice would be to live life to the fullest with integrity and no regrets. Be happy, take risks, and don’t ever put off telling someone you love them.
Data is not information;
Information is not knowledge;
Knowledge is not understanding;
Understanding is not wisdom.
~ Cliff Stoll & Gary Schubert
What would you do?