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Old 05-20-2020, 06:28 PM
Nars Glinley is online now
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How important is an accurate family medical history?


I know a couple that have a child. The child is only biologically related to one of them. They do not plan on telling the child that. When the child grows up and lists family medical history, they will provide inaccurate and/or misleading information. How important is it to have an accurate family medical history?
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Old 05-20-2020, 06:50 PM
Hilarity N. Suze is offline
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I was adopted. I knew nothing about my family medical history. When asked things about it I just checked no on everything. My adopted family had a lot of problems such as insanity, tendency to obesity, and heart disease. I did not check those because I was adopted.

It turns out, now that I know more, that insanity and heart disease are apparently rampant and I should have checked them.

But in the end, it doesn't seem to have affected my health care in any way. I don't think doctors rely heaviy on family medical history. I'd be willing to bet that a lot of them never even look at it.
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Old 05-20-2020, 07:46 PM
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There's no excuse for parents ever providing misleading or inaccurate family medical history.

It may be vitally important for a child to eventually learn of significant family medical history, such as unusual/frequent/early age of onset cancers that might suggest something like Lynch syndrome, a BRCA mutation that predisposes to breast cancer, a family history of serious heart disease etc. etc.

If relatives going back as far as anyone can remember have pedestrian medical histories, such information is much less useful.
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Old 05-20-2020, 08:49 PM
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I was adopted. I knew nothing about my family medical history. When asked things about it I just checked no on everything. My adopted family had a lot of problems such as insanity, tendency to obesity, and heart disease. I did not check those because I was adopted.

It turns out, now that I know more, that insanity and heart disease are apparently rampant and I should have checked them.

But in the end, it doesn't seem to have affected my health care in any way. I don't think doctors rely heaviy on family medical history. I'd be willing to bet that a lot of them never even look at it.
Pretty much this, in my case. I knew nothing of my bio-family medical history while growing up and always put "unknown, adopted" when asked.

Later my bio-relatives got in touch and I learned that my mother had pathological myopia/retinal degeneration, just like me (and it is usually passed down on the maternal side, apparently). But it made zero difference in any care I received; the fact I had inherited her terrible eyes was obvious to the first ophthalmologist I ever visited, at age 7.

There is also schizophrenia on both sides of my bio family. Not sure it would have helped to know that when I was younger. I've been a little worried for my son, who so far is about the least schizophrenic person on the planet, but I know symptoms typically manifest by age 25 or so and he's only 22, but does it help knowing what I know about my bio family background? Not really. It changes nothing about my life or his, except that maybe I worry a little more.
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Old 05-20-2020, 09:11 PM
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Originally Posted by Nars Glinley View Post
I know a couple that have a child. The child is only biologically related to one of them. They do not plan on telling the child that. When the child grows up and lists family medical history, they will provide inaccurate and/or misleading information. How important is it to have an accurate family medical history?
It's also not wise to keep a secret like that from a child, IMNSHO.
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Old 05-20-2020, 10:56 PM
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I had a childhood friend who was adopted. He never smoked, he didn't drink any more than any normal person, didn't do drugs. He was in good shape, not overweight. About a year ago, he dropped dead of a heart attack at 47.

I don't think he knew anything about his biological family medical history. Maybe if he had, he would have known he was at risk of heart disease. Or maybe the heart attack was unrelated. We'll never know.
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Old 05-20-2020, 11:00 PM
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but for example - my grandfather and both great-uncles died in their 60's from heart disease... but that was due to childhood scarlet fever, apparently, so has no bearing on my health. My father died relatively healthy except for bowel problems and an infection at 92, my uncle at 91, and my other uncle is still alive at 94. So it didn't matter to them either.

It's a good idea to know, but it's not a guarantee of what's in store for you.
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Old 05-21-2020, 12:00 AM
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Of course it's important to know an accurate family history. If it weren't, do you think doctors would be wasting their time taking it down?

Most of the time, there's not a lot to worry about. Once in awhile, there's vital stuff to be aware of. You don't know until you have the information. The fact that somebody else on this board had that parents died of something that didn't get carried down to the offspring is completely irrelevant.

As an adoptive parent, you bet I got the family medical histories of the birth parents. We know of 3 serious traits that my daughters have needed to know. None of these traits are rare; in fact they're extremely common.

With the advent of AncestryDNA and 23&Me, the kid is going to find out the truth at some point. Hope the parents are prepared for this.
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Old 05-21-2020, 12:04 AM
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but for example - my grandfather and both great-uncles died in their 60's from heart disease... but that was due to childhood scarlet fever, apparently, so has no bearing on my health. My father died relatively healthy except for bowel problems and an infection at 92, my uncle at 91, and my other uncle is still alive at 94. So it didn't matter to them either.

It's a good idea to know, but it's not a guarantee of what's in store for you.
So your grandfather and great-uncles did not have congenital heart disease, they had scarlet fever. That is their history. You did not demonstrate what you think you demonstrated.
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Old 05-21-2020, 12:13 AM
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Is "only biologically related to one of them" due to infidelity on someone's part? And this is why it's a deep dark secret that they're never intending to tell the child about?

I agree that keeping this secret forever sounds like it will come back to bite them at some point, but I don't know that 'because accurate medical history' would be the silver bullet needed to persuade the parents of that
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Old 05-21-2020, 12:24 AM
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Is "only biologically related to one of them" due to infidelity on someone's part? And this is why it's a deep dark secret that they're never intending to tell the child about?

I agree that keeping this secret forever sounds like it will come back to bite them at some point, but I don't know that 'because accurate medical history' would be the silver bullet needed to persuade the parents of that
I was thinking that either the child was conceived via sperm or egg donation, or the biological father is not in the picture for whatever reason, and the child believes that the mother's husband is his biodad and they don't want him to go looking for his "real dad".
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Old 05-21-2020, 01:24 AM
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Originally Posted by Nars Glinley View Post
I know a couple that have a child. The child is only biologically related to one of them. They do not plan on telling the child that. When the child grows up and lists family medical history, they will provide inaccurate and/or misleading information. How important is it to have an accurate family medical history?
Do this couple KNOW the medical history of the ???MYSTERY??? biological contributor? If so, then I would consider them honor-bound (not to mention filial-bound) to divulge it. And if not, they're honor-bound to divulge THAT.

This "Let's not tell the kid his conception story" line might have been a good idea a hundred years ago, but with today's knowledge of genetics, it strikes me as irresponsible.
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Old 05-21-2020, 01:36 AM
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It's also not wise to keep a secret like that from a child, IMNSHO.
To be clear, I agree with this. I just think there are far better arguments for telling the truth than, "Oh noes! S/he won't know his/her biological family's medical history." Because, let's face it, knowing that your dad (or mom) is not your bio-parent is rarely going to be of any significance, medically.
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Old 05-21-2020, 01:41 AM
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When I saw a doctor for the first time in years about 10 years ago (finally got affordable insurance), he was appalled that my medical history is so blank. Well, my mother was an sent from Estonia to an orphanage in Finland in 1939. She was 6.

My dad's side is because most of the family died at least 100 years ago. Who knows what his grandparents really died of? Not my dad, that's for sure. I have dribbles of info - there seems to be some alcoholism running in my family, for example. How much use that is when I don't drink I have no idea.
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Old 05-21-2020, 02:45 AM
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Because, let's face it, knowing that your dad (or mom) is not your bio-parent is rarely going to be of any significance, medically.
...and, to follow on, is more likely to be a big emotional deal for someone finding out about it in adulthood than someone who's grown up with the knowledge, presented in a matter-of-fact kind of way in childhood. IMHO.
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Old 05-21-2020, 04:47 AM
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I know a couple that have a child. The child is only biologically related to one of them. They do not plan on telling the child that.
That is going to bite them in the ass the first time the kid gets a 23andme or other similar genetic test. It is impossible to keep secrets like that anymore.

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How important is it to have an accurate family medical history?
Depends.

If there is some sort of inherited disorder it could be critical. In many other cases it makes next to no difference.
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Old 05-21-2020, 06:13 AM
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I was thinking that either the child was conceived via sperm or egg donation, or the biological father is not in the picture for whatever reason, and the child believes that the mother's husband is his biodad and they don't want him to go looking for his "real dad".
It was egg donation. I donít know if they know the donorís history or not. The teenage child certainly doesnít.
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Old 05-21-2020, 09:57 AM
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Of course it's important to know an accurate family history. If it weren't, do you think doctors would be wasting their time taking it down?

Most of the time, there's not a lot to worry about. Once in awhile, there's vital stuff to be aware of. You don't know until you have the information. The fact that somebody else on this board had that parents died of something that didn't get carried down to the offspring is completely irrelevant.
I think doctors use it as one more piece of data, primarily for diagnostic purposes. That's not to say that they'll say "Oh, your grandparents and parents all had gallbladder problems, so that must be your issue." without doing their due diligence, but it gives them a direction to start looking in.

Or, if it's one of those diseases where there's a "tendency" toward something, they can start looking earlier, or treating you more aggressively. For example, men in my family seem to get hypertension around 35, regardless of physical shape, smoking, etc... Knowing something like that, a doctor could start ordering quarterly BP checks for men in my family when we turn say... 32, and get us medicated as early as possible, instead of waiting until (if) we show symptoms, or randomly catch it on a physical, at the dentist, etc...
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Old 05-21-2020, 10:22 AM
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A friend found out she was adopted in her late 30s after her son developed symptoms of diseases almost always inherited. Outside of unusual combinations of childhood infectious diseases the symptoms were virtually unheard of. This was finally the point where her parents fessed up. Her parents had the most common excuse, they intended to tell her someday but in never seemed to be the right time, and what difference did it make? In this case it saved a lot of pointless testing and ineffective treatment attempts. I don't know if she ever could track her biological parents.

I have an adopted son and we'll never know for sure who the biological father is. He's had some medical issues that haven't been to serious but it would still be nice if he could ever have such a medical history available.

No one should hide information like this.
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Old 05-21-2020, 10:24 AM
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It is possible there is nothing in the real or fake medical history of concern, but as others have mentioned, it's not a good secret to keep from a kid.

Do they really want to risk the kid taking a DNA-test for fun, or because they think 23andMe's health advice is worth it, and discover that they only match cousins on one side of the family? If they find having the conversation _now_ is awkward and may cause issues, imagine having it because the kid finds it out on their own at 34!
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Old 05-21-2020, 10:51 AM
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Do they really want to risk the kid taking a DNA-test for fun, or because they think 23andMe's health advice is worth it, and discover that they only match cousins on one side of the family? If they find having the conversation _now_ is awkward and may cause issues, imagine having it because the kid finds it out on their own at 34!
FWIW, the 23andme health advice is not always correct. My half sister took it, said she doesn't carry the gene for polycystic kidney disease. When she tested to see if she could donate a kidney to me, found out she in fact DOES have the stupid disease.

Like other posters, I am also adopted. I took to carrying a red sharpie to write in bold letters across the "Family History" questionnaire "AM ADOPTED - NO INFORMATION", not that it stopped medical professionals from asking. My life would've been different if I had known one of my bio-parents had PKD. I could've done many things that mayhaps would have prevented kidney failure. I guess I look at it as "it is what it is".
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Old 05-21-2020, 11:05 AM
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FWIW, the 23andme health advice is not always correct. My half sister took it, said she doesn't carry the gene for polycystic kidney disease. When she tested to see if she could donate a kidney to me, found out she in fact DOES have the stupid disease.
I don't think anyone should do a 23andMe-test for the health advice. They are a for profit company selling analyses that wont be good medical science or, more likely, refuted medical science, for many years yet. Some of the individual SNPs might be important, but we don't know now.

And as you say, even for the genes we do know are important, they make mistake, because they're a cheap mass market product, not a part of the medical system.

But wanting the health advice, or ethnicity guesswork, or cousin matching, might lead someone to discover their parents are idiots who think it makes sense to try to keep their genetic heritage a secret.
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Old 05-21-2020, 11:27 AM
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So your grandfather and great-uncles did not have congenital heart disease, they had scarlet fever. That is their history. You did not demonstrate what you think you demonstrated.
Yes I did. I showed that unless that little detail about childhood disease is passed on too, someone may assume genetic factors where they are in fact environmental. I think the fact came out when my dad went to Grandpa's funeral - or maybe his uncle's.
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Old 05-21-2020, 11:52 AM
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Yes I did. I showed that unless that little detail about childhood disease is passed on too, someone may assume genetic factors where they are in fact environmental. I think the fact came out when my dad went to Grandpa's funeral - or maybe his uncle's.
So if you're given an incomplete medical history which leaves out vital information, it may not be useful. No argument with that.

Last edited by needscoffee; 05-21-2020 at 11:56 AM.
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Old 05-21-2020, 11:55 AM
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I think doctors use it as one more piece of data, primarily for diagnostic purposes. That's not to say that they'll say "Oh, your grandparents and parents all had gallbladder problems, so that must be your issue." without doing their due diligence, but it gives them a direction to start looking in.



Or, if it's one of those diseases where there's a "tendency" toward something, they can start looking earlier, or treating you more aggressively. For example, men in my family seem to get hypertension around 35, regardless of physical shape, smoking, etc... Knowing something like that, a doctor could start ordering quarterly BP checks for men in my family when we turn say... 32, and get us medicated as early as possible, instead of waiting until (if) we show symptoms, or randomly catch it on a physical, at the dentist, etc...
Yes, of course, mine was a rhetorical question. Sometimes the info is vital, sometimes it's just a piece of the whole picture.
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Old 05-27-2020, 10:46 AM
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A couple anecdotes from my personal life:

About 2 years back, my daughter saw an ophthalmologist to follow up on an incidental finding on a brain MRI (the report suggested she might have a staphyloma, which is an eye bulge associated with extreme nearsightedness). The ophth said "no staphyloma, but elevated optic disc" and said "might be too-high spinal fluid pressure, see a neuro, you probably need a spinal tap" (as this scenario could actually be rather dangerous - conceivably a symptom of a brain tumor or simply pseudotumor).

As the daughter was in transit, and her neurologist was out-of-pocket temporarily, we were somewhat frantically trying to arrange for her to see someone in her new town.

I had a copy of the report with me when I saw my own ophthalmologist, showed it to her, and said "she's not your patient of course, but can you translate this for me?". She basically concurred that my daughter should see someone, specifically a neuro-ophthalmologist if we could find one. She didn't seem too worried about it being URGENT SEE DOCTOR NOW.

Then 10 minutes later, she said "You know, *you* have benign drusen - nothing to worry about. That often runs in families - and it can look like an elevated optical disc. Make sure whomever she sees knows about that.".

End result: she did finally see a neurologist (for the issue that triggered the brain MRI) and then the neuro-ophthalmologist. The "elevated optic disc" had either resolved (it can be a transient thing) or was deemed to be just what my doc suggested: drusen mimicking it.

And possibly related: When I was about 7, my oldest brother went through a rough time including a hospitalization and a spinal tap - because something spotted incidentally on an eye exam was suggestive of a brain tumor. I don't know how long it took them to say "hey, let's look at family members". My mother had the same findings - "blurring" was the word my brother used. Problem. Solved. Mom claimed that the doctor looked at the rest of the family also - I have no memory of that, and my brother says it was just Mom that got checked. I suspect the "blurring" was basically the same thing they observed in my daughter (and me).

But in any case, knowing something about the family history could have saved my brother a lot of misery, and DID reassure my daughter. I'm still stunned that my brother's doctor didn't recall in time that maybe he ought to check the family to see if this was something benign.

Now, both my parents died from cancer. Not relevant to me (dad had prostate cancer, mom had lung cancer related to smoking) but VERY relevant to my brother: he was diagnosed with prostate cancer a year or so back, and due to the history, his treatment was more aggressive vs the "you'll die WITH it, not OF it" attitude that sent Dad onto the next plane of existence earlier than expected. I will make sure both my kids know about my father, for sure.

Re the OP's friend: Well, the truth is that a lot of people will have spotty family histories. And an egg donor / sperm donor might well gloss over some aspects of history, either through ignorance of them, or thinking "not relevant, and if I say so it'll get me banned from donating". If the friends DO know anything of the history, maybe the kid could be informed in a vague way e.g. "I think I had a cousin who had xyz disease".
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