Service of Genetic Tests: Do You Want to Know or Not?
April 17th, 2017
Categories: Genetic Testing, Medical, Medical Tests, Medicine
Most of my friends and colleagues present themselves for medical tests and checkups when they should while I drag my feet attending to only the most essential. My philosophy: Who wants to know?
So it would be very unlikely for me to send away to 23andMe at any time in my life to learn whether one or more of the 10 diseases the company tests for, such as late-onset Alzheimer’s or Parkinson’s, will afflict me.
There are many chomping at the bit to find out and now the FDA says that they can: No more need to pass by a genetic counselor or through a doctor for the privilege. Spit into a receptacle to provide a sample of saliva; send $199 and voila—you’ll soon know about how or if you relate to any of the 10.
Jessica Boddy, NPR summarized info on an FDA press release: “The tests assess genetic risk for the conditions but don’t diagnose them, the FDA says. The agency urges consumers to use their results to ‘help to make decisions about lifestyle choices or to inform discussions with a health care professional.’”
The FDA’s Center for Devices and Radiological Health director Jeffrey Shuren said “‘it is important that people understand that genetic risk is just one piece of the bigger puzzle, it does not mean they will or won’t ultimately develop a disease.’ Other known factors that can play into the development of disease include diet, environment and tobacco use.”
We already know about the importance of a healthy diet and the risks of tobacco use as they relate to all sorts of diseases–so nothing new here–and I can’t do much about my environment. Loosening regulations on power plants and reducing fuel efficiency standards for cars is going to impact everyone in a bad way. I wonder if people in 45’s administration realize that they, their children and grandchildren might suffer as a result?
Referring to test results Boddy quoted a Harvard Medical School professor who warned that the “information is complicated.”
Nobody in the article spoke up for those who don’t want to know. Do you want to learn what your genetic makeup indicates might happen? Would you be irritated if at 68 you sold your house and all your belongings to move into an adult care facility and found yourself at 95 in great form still with no signs of late-onset Alzheimer’s? Would knowing spoil what’s left of your life be it 20 or 70 years? Would you cancel your marriage plans if you wanted to have children and you learned that both you and your intended had similar genetic indicators for a nasty disease?
Tags: 23andMe, FDA, Jeffrey Shuren
I’d like to suggest that the person who sold their home and all their belongings, then moved into an adult care facility, should have taken the test first, rather than after the move. We are all at risk for Alzheimer’s disease, but moving into a nursing home because it might happen is silly. In the Twin Cities, there are several places that allow seniors to move in and, if they are healthy, stay in their own apartment. If their health fails, they can gradually get more and more help, as needed.
If I were at risk for a serious disease, I would want to know. While, I wouldn’t cancel marriage to someone who was at risk for such a “nasty disease,” if both of us had markers for it, I would adopt rather than have natural born children.
I agree wholeheartedly with you about not seeking genetic information about possible ailments. The thought of the possible in the future would become a terrible worry and distraction in the present. The information like that on pharmaceutical contraindication that come with a prescription can cause one to imagine having any or all of them at once.
On the other hand I am curious and would like to take the ancestry test to know more of my family history.
Judy,
That was a hypothetical person who moved into the nursing home unnecessarily and the hypothetical person moved because she took the test and was found that she had markers indicating that she MIGHT get late onset Alzheimer’s. But that’s one of the troubles with these tests–they guarantee nothing and in this fake instance, the woman never got it but nevertheless moved from her beloved home and the neighbors she loved.
You are one of the brave ones. I envy you. And there are millions like you or this business would not have pushed to get FDA approval to sell its services directly to the public. I am a chicken and figure I’ll deal with each disaster as it comes. I don’t want to spend my life waiting for the hatchet to fall on my head.
Martha,
I figure that once a company has my DNA–regardless of the reason–it can make hay with it in any way it wishes. How am I to know? Were I in my 20s the company might share it/sell it with/to a life insurance company that could refuse me as a client or charge me more based on info learned. I don’t trust anyone….even though every check I write eventually hits the Internet as money travels from one to another bank, I don’t want to add to the hacking probabilities by conducting my affairs via online banking. Checks for me, please!
There’s already far too much personal information “out there” about everyone. Why make it easier to mind my–and everyone else’s–business?
There’s a reason people don’t flock to fortune tellers. Who enthuses over the prospect of visions of the house burning down, murder, earthquake or worse….and now diseases? Those feeling differently, are likely to check out future calamities. Wanting or not wanting to know what lies ahead is a matter of personality.
However, there’s a good reason for some to go for a DNA test, one that does not cover doom, disease & death departments, but that of ancestry, especially if one has shady great/great great grandparents. Inquiries need not address personal medical questions, but may go a long way towards casting bright lights on an opaque family history.
Lucrezia,
I agree only in this way: If there was something I could do about the disease likely in my future, that is one thing. Take heart disease. Were it known in my family, I would be careful to cut down on Haagen Dazs, figure out how to address the tedium of exercise, might not have smoked when I thought it cool as a teen before I became hooked and would have taken meds that a doctor prescribed for whatever was necessary that might not have been available to my ancestors.
But there is no way to avert some–and maybe all–of the diseases on which the test sheds light. So why know especially if what you know is a maybe that could ruin your life with worry.
Not quite sure it helps me to know if my great-great-great grand mother or father had his/her hand in someone’s cash register or won every battle ribbon in a war or designed the most remarkable fashions. It might be nice to know but unessential….
I do use online banking on a limited scale. I suppose that does make me open to further hacking. I had not thought of all the possibilities the submission for “Ancestry.com” might generate. I am undecided whether or not to pursue it because of my curiosity. I do worry about exposure, but Mr. Trump has taken away any privacy we might have had with the net. More than anything I am concerned with his progression in creating unconstitutional rule and a facist system for control of EVERYTHING!
Martha,
No doubt the Turkish playbook–they don’t need Parliament so why do we need Congress?–will be something 45 will follow.
I have not had my DNA tested before now both because I have been too cheap to pay for the service and lacked confidence in the sophistication of the data being collected. However, were I younger, I would certainly “find” the money and have this testing done. As it is, my decision making days are largely behind me.
Your post has led me into a bout of introspection. Over a long life, when it comes to really important decisions, I have probably made more bad ones than good, and the reason for this is that, more often than not, I have depended on my intuition instead of making a thorough, careful and detached analysis of whatever pertinent data was then available. Furthermore, it used to take hard work and rigorous detachment to assemble such material successfully. It was far easier not to bother. Now, that is all changed. Much of what you need to know is readily available. Why ignore it?
Like the internal combustion engine, DNA’s discovery dates back to the industrial revolution at its height, however while the engine had permanently changed how we lived by the early 20th century, the just as powerful impact of DNA knowledge on how we make life’s important decisions is just beginning to be felt now, more than a century later. And, with any luck, our better decisions might just make Earth a better planet to live upon.
hb,
If I won a $multi-million lottery I wouldn’t get the test which I made clear in my post. I admire your bravery.
As for depending on intuition, I find that many of my most glaring errors have happened when I turned a deaf ear to mine. As for making deep analysis of available data there’s a question of how much of what is available is true or fake and how much is available to John Q Citizen. Say you buy a stock based on information you are aware of but you didn’t know that an Enron-like situation is going on. Can you blame your intuition or lack of research? I don’t think so.
DNA has its great aspects: It helps people wrongly jailed get out or not be incarcerated in the first place. It can get scary when some try to manipulate it to create perfect people. Like perfect tomatoes or strawberries bred to look great and last a long time, missing is flavor. And at first when only the wealthy can afford to give birth to so-called perfection, what happens to everyone else?