"The problem with genome sequencing is that everyone could have incidental findings."
Recently in class we read the Time's article "The DNA Dilemma: A Test That Could Change Your Life." It's very interesting to read articles like these and to hear about new technologies. Most people probably don't know about genome sequencing and how much we can tell from them. In case your one of those people, genome sequencing gives doctors the ability to read your genes and see "down to every last typo on a chromosome". The article describes the procedure as : "...lab technicians need less than a teaspoon of blood, which is chemically treated to burst open the cells so the DNA inside them can be collected. Those microscopic strands are then fed into sophisticated machines that read each of the 3 million bits of information, called base pairs, that make up a persons genetic alphabet. Computers scan the data for the equivalent of spelling mistakes. Some mistakes cause disease; others don't." Along with the technology to discover these things comes the tricky questions like : Should doctors tell patients everything they learn, even about the risk of diseases for which there are not yet cures? and Should parents tell their children what might await them as adults?
The article brings up the results of a study where parents were asked if they would want to know everything that's wrong with their child and shockingly, "nearly all the parents said they would want to know about every disease risk, even if there's no treatment available." Unlike the parents, the group of bioethicists, lab directors, geneticists, pediatricians and genetic counselors felt the opposite. The majority of them believed only results that could be immediately acted on should be shared with families; personally, I would have to agree. If I was a doctor, I wouldn't tell my patient or the parents anything that doesn't affect them now. Part of my beliefs is that I believe in living in the present and worrying about what matters now. The future is a big issue in genome sequencing. Its the doctors actions of whether to tell or not that affect the child's future. For example, the results could show that a child has the possibility of getting a disease as an adult. Most people right away would want to know what disease it is, but its only a possibility. The disease hasn't formed yet and they don't know for sure that it will. Accidental findings like things aren't 100% correct. Tom Murray has an interesting opinion on this, he said : "Great, we can sequence the genome of a fetus. What the hell does it tell us? Much less than most people probably believe. Probabilities are not the same as guarantees." I wouldn't want to know about anything I might get in the future and even as a parent I wouldn't want to know if it was my child. The times article features a story about a woman named Laurie Hunter who had her children sequenced. She talks about waiting for the results of her own genome sequencing when she says "Sometimes what you don't know is easier. I feel completely overwhelmed with information. Now it just feels like a waiting game." The problem with finding out everything is that once you know there's not much you can do, not every disease has clear instructions on how to prevent it. People argue that knowing is overall beneficial because later in life there may be a cure to the disease but you have to keep in mind that things change. The typo may not affect you/your child after all, anything could happen, and if you're told you might loose all your memory at age 50 you'll live your whole life with that in the back of your mind. Imagine telling a child they could develop cancer as a young adult, that child will have that weighing them down.
In conclusion, we may have more technology than what is good for us. Its great that you could stop a child from getting diabetes but there's always uncharted territory " and patients entering this territory with imperfect maps need to reckon with the odds of getting lost."
