Posted by: notdeaddinosaur | February 17, 2013

Genetic Testing and Financial Planning

My blogging has been going very well of late. I’ve gone from 5 regular readers to 7. And they write comments! With questions, no less:

My [spouse] and I are 63 and childless. We are thinking of spending $99 to get genetic screening…on the theory that it could help us plan a little better for our old age. Just as a random example, if I knew my chances for getting Alzheimer’s disease were high, I might want to move into assisted living sooner rather than later. We have many questions. Is this testing accurate? Does it raise more questions than it answers? What are the chances for our information remaining private in a real world where data leaks occur all the time? As a doctor, is this something you would consider for yourself?

Excellent questions. Here are the answers:

  • Depends what you mean by “accurate”
  • Yes (actually: Hell, yes)
  • Iffy
  • No way

Here they are in more detail:

Accuracy of genetic testing

We now have the technical capability of sequencing the entire genome of any given human. This is time-consuming, expensive, and not what commercially available genetic testing does. What they do is test for a panel of specific genes and gene variants. This they do “accurately”. What is still very much in the not-ready-for-prime-time phase is the relationship between those specific genetic variants and the emergence of actual, diagnose-able conditions like Alzheimers or diabetes. Even so, finding various genetic variants will never tell you that you will develop a certain disease; the best it can do is give probabilities. And even if those probabilities are high, it still can’t tell you when or how the condition will manifest.

Questions vs Answers

Because all you’re going to get is probabilities, you’re always going to have more questions: When is the disease going to show up? How will I know it? Is there anything I can do to prevent or delay its onset? How about minimizing its impact? Again, the relationship between the presence of certain genes (or genetic variants) and specific diseases is far more fuzzy than Marketing will ever admit. The specific site you reference appears to be geared more toward ancestry and family genetics, so I wouldn’t even be sure of the specific utility of any given result, especially in the context of financial planning.

Privacy Concerns

In general, my take on Internet Privacy is what I call the YouTube rule: yes, anyone can see anything you put up, but because there’s just…so…MUCH…of it, as a practical matter, no one can find anything unless they’re actively looking for it. The other piece of this is that yes, anyone can find out anything they want about you if they really want to, but by and large, unless you’re George Clooney, no one really cares enough to do so. Then again, you may very well run into the problem of insurance companies coming across (or worse, requiring you to provide) the information and then using it against you, either in terms of refusing to issue a policy or affecting your premium. So yes, that’s a very real concern.

And finally:

Would I spend the money to do this myself?

Absolutely not, and certainly not in the context of financial planning. My take on the current state of commercial genetic testing is that it provides no better medical information than a good family history. Are there situations when it may make some sense? Sure: adoptees with no access to medical information about their birth families may find it useful. Exploring one’s genetic heritage? Sounds like fun. But as a financial or estate planning tool? Worse than useless. My advice is to take the $99 and put it towards a good accountant or attorney with experience in end-of-life financial planning who will sit down with you and craft a strategy that makes sense for you.


Responses

  1. Thank you SO much. I will take your advice. All of it, including putting my $99 toward a good end-of-life strategist. Again, thanks for taking some of your precious Sunday down-time to answer my question.

  2. Since my mother, who smoked three packs of cigarettes a day for more than half a century did NOT die of lung cancer [ovarian cancer got her instead, at a very respectable age], and my father died in his sleep at age 90, I am of the opinion that genetic testing would not be very useful in my case [I've never smoked]. All my diseases [bad back, arthritic knees, and type 2 diabetes] are due to my being overweight [something my mother never was as the cigarettes killed her appetite] and my choice of profession [midwifery and nursing]

    And whenever I contemplate my overdraft, I often think a bit of Alzeheimer’s might be very comforting so no, thanks, I’ll live with an unknown future. Sometimes I think that genetic testing is rather similar to that phenomenon that some readers indulge in: reading the beginning of a book, to discover who the characters are, then skipping to the end to find out what happens, and only then going back to the middle — which, by that time, is often boring.

    BTW, I always follow your blog, so I guess you have at least 8 steady readers

  3. As someone who works with, and thinks a lot about, genetics, I have a much different perspective. Dr. Dino makes some excellent points about this being no more helpful than a good family history. At your age, any genetic factors that would predispose you to early onset of certain diseases would probably have had some effect on you already. However, from a scientific perspective, it might be interested to look at what bullets you dodged, and this may help scientists understand gene-disease relationships better to provide for better genetic testing in the future.

    As for the questions vs answers concern, if you don’t take the testing results as guarantees, I don’t think it would raise additional medically relevant questions. Your doctor should already know to look for common diseases (cancer, alzheimers, diabetes, etc.), so finding that you have an increased risk for one or more of these diseases shouldn’t change your doctor’s practice.

    Regarding privacy, I recently attended a seminar about protecting genetic privacy. (Interestingly, they looked at how likely people were to hide their genetic information when participating in a study. It made me wonder if there’s a genetic contribution to being more or less ok with the potential for other people finding your information.) Most of these services will not release your information unless you allow it to be used in scientific studies, in which case, it will be de-identified. Whether or not they can truly guarantee that is another story, although the US passed a law in 2008 to protect employers or insurance companies from discriminating against you on the basis of genetic information.

    Personally, I would love to do this myself. I’m still deciding whether I want to do this sort of service, or wait until full genome sequencing falls under $1,000 (currently, it’s around $10,000 for a full human genome). My philosophy is that I already know who I am and what diseases to screen for my long-term health (thanks to Dr. Dino’s excellent family history taking), but I’m curious which of my physical and personality traits may be genetically influenced. Also, I’ve been having trouble tracing my ancestry beyond 3-4 generations, so I’m curious where my genes come from beyond that.

    I think this sort of testing can provide some very interesting information, but it may not be useful for your situation. I agree that it should not be used for financial planning purposes, but it still could be fun.


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