I 100% am.
I hope you don't mind this sir, but I am going to email you why, since I don't want a long explanation of my medical data on hn alongside feelings about my family.
I still think it is something you should hear before you pass
I hope you don't mind this sir, but I am going to email you why, since I don't want a long explanation of my medical data on hn alongside feelings about my family.
I still think it is something you should hear before you pass
Yes, I'd do this if I could find a researcher willing to help, and if I thought my disease had a genetic basis. As it is, I've put it down to "dumb bad luck" and there's no sequencing that.
I'll explain: my family has no history of cancer. We tend to die from natural causes, not too late, not too early. I'm unusual. The cancer originally in my bile duct is also extremely rare in Europe and America. Yet it turns out to be a main (if not the main) cause of death among 50+ males in certain east Asian countries.
So it's (almost certainly) a liver fluke carried in raw farmed fish, which is slipping into the global trade as "sea fish" and being used in cheap sushi restaurants. The fluke attaches to the bile duct and produces carcinogens because it likes feeding off the tumors.
The bad news is there are going to be a lot of western men in their 50s who get dramatically bad news out of nowhere, as this parasite must now be lodged in tends of thousands of us. Good news is this killer will finally benefit from some real attention, to the benefit of all.
Interestingly, women are almost entirely unaffected.
So while sequencing my DNA wouldn't help much in my case, there is one message I'd like to send to the world: "Stop eating fish. Fish is shit." One should not be eating wild proteins anyhow. It's unethical IMO.
(I had to make the joke,sorry)
I want to agree with you about "dumb bad luck." Unfortunately, your description of why turns the science question gears in my head if there is an epigenetic or genetic or a mixture of both (especially since this appears to be X linked? testoterone level linked? something along those lines?) What about maleness matters that leaves women nearly unaffected? Are there certain men more likely to be affected given that sushi has been around for like 30 years in the west, in some places longer, and the rates haven't risen dramatically yet.
And while on the surface it sounds like you have an awesome family tree, many people's families underdiscuss their family health in their family trees (mine is unusual in that we don't). In some cases old documents are misunderstood in terms of cause of death (eg: consumption used to be a thing) I don't know your family dynamics well, especially 5 generations back. Having an actual copy of your DNA in a database (and having a copy of your medical records in a super ideal world in safety deposit box for when they are older for essentially the same reason), basically ensures against questions later.
besides, you also have no idea what good genes/epigenetics that you never got to take advantage of that got passed down. Same probability principles hold, and as overall sequencing costs go down for the general population, there will be research in that area as well, and they might be interested in that as well
And you should really tweet about the fish - I actually didn't know about the parasite :/