4 ms·

I did 23andMe many years ago around when it first came out (and I therefore have access to certain results others can’t get since this was pre-FDA settlement).

I did 23andMe many years ago around when it first came out (and I therefore have access to certain results others can’t get since this was pre-FDA settlement). At the time, I ignored the fact that it said I was 4x more likely to develop colon cancer (I was in early 20s). My sister was diagnosed with colon cancer 3 years ago. When you are a woman diagnosed in your early 30s, apparently it is due to genetics. She discovered it by going to three different doctors after insisting she wasn’t feeling well and that it felt “deeply internal”. The doctor who suggested a colonoscopy did so because he had an internship for a year at a cancer clinic in Boston. The others thought it was in her head. Well they found a malicious tumor and the prognosis from the nations leading cancer clinic was to remove her colon, her uterus and ovaries and large intestines (in their entirety). You can imagine this is a lot to ask of anyone. We asked for data that supported the conclusion that if we don’t remove all of these parts the cancer would spread to her ovaries and kill her and there was literally none to be had. It was 100% based on the doctors personal experience (again we were at one of the top clinics in the world for this). There is something structurally off with the modern medical system. I believe it relies too heavily on anecdotal experience and memory. I don’t know about you but I can’t remember what I ate yesterday. I think services like 23andMe are on to something, if only as a data point to empower patients to self advocate. We did nothing with the data but he moment I got the phone call I couldn’t help but wonder if we could have found this earlier.

mr_overalls 9y ago
> We asked for data that supported the conclusion. . . and there was literally none to be had. It was 100% based on the doctor's personal experience On a semi-related note, I've had a few conversations with physicians about the utility of AI in medicine, and all of them seem to be adamantly against any technology that displaces the individual doctor as dictator/hero of the medical hierarchy. In one memorable exchange with a surgeon (and friend), I pointed out that doctors, like most other educated humans, are pretty terrible at applying statistics to any kind of complex decision-making - and I brought up your observation that doctors are limited to the knowledge/anecdotes/heuristics that fit in their own heads. Why not employ some kind of machine intelligence to at least aid in diagnosis, double-check treatment plans, prevent medical errors, etc? My friend abruptly changed the subject and began waxing poetic about how his decades of experience allowed him to glean enormous amounts of information from the mere tactile sensations of a loop of bowel in his hand during surgery. How would a machine replicate that, he asked. The conversation wasn't even about robotics. I don't have a lot of faith that doctors - outside of a few pioneers - will begin using medical expert systems until they are forced to.
- milesdyson_phd 9y ago
  You bring up a great point. I think a lot of people, not just surgeons, would trust their own experience and intuition over AI (at least initially). Not to mention the whole human characteristic of resisting pretty much any sort of change (even if it's for the better). I think AI in medicine can be great, especially if you start using it to augment a physician by keeping them up to date with the most recent research/papers/literature on a given topic.
- lefstathiou 9y ago
  I've had this conversation with doctors quite a bit. The missing link, in my opinion, is that the mind is an incredible tool only made better with good data. I don't think you or anyone is advocating to replace doctors with a TI-86, we just want data driven / supported decision making and I just can't figure out why we can't bridge that little gap. I have a spreadsheet that I actively log the total amount of time I spend with my doctors and their staff when I see them in person. All I am going to say is god bless nurse practitioners.
  - jonlucc 9y ago
    Before, lots of data was based on billing codes, which are a total mess. With electronic medical records, now they can finally collate the data in a meaningful way. Dr. Atul Butte is doing that at UCSF for the entire UC system, but it just didn't exist before a year ago. I just saw a presentation of his a few weeks ago, and he's digging into stuff like "why are there hundreds of treatment paths in the first 12 months for patients diagnosed with T2D at UC hospitals?"
- slededit 9y ago
  A gentleman's hands are already clean - no need to wash before a procedure.
mistersquid 9y ago
Thank you for sharing these details. It's helpful to know details about aggressive therapeutic regimens doctors might suggest. Excuse me if I am intruding and do please disregard my question if you prefer not to answer. I'm presuming your sister did not follow the therapeutic regimen recommended to her. If this is the case, would you mind sharing what treatment she did pursue and whether she is currently in remission? In any case, I hope your sister is well as she can be. I hope also that you and the rest of your family remain healthy despite your genetic predisposition.
- lefstathiou 9y ago
  I appreciate the kind words and don't mind chatting about it at all. My sister taught me that it is much better to talk about these things as it could save someone's life someday. She did take the treatment and the cancer is in remission. I am happy to chat about this and she is as well to the extent you wish to go straight to the source. After her recovery, she organized a group of young mom's that meet regularly to help each other cope with cancer (and what she considers to be the more onerous issue - the thought of not seeing your kids grow up).

mr_overalls 9y ago

> We asked for data that supported the conclusion. . . and there was literally none to be had. It was 100% based on the doctor's personal experience On a semi-related note, I've had a few conversations with physicians about the utility of AI in medicine, and all of them seem to be adamantly against any technology that displaces the individual doctor as dictator/hero of the medical hierarchy. In one memorable exchange with a surgeon (and friend), I pointed out that doctors, like most other educated humans, are pretty terrible at applying statistics to any kind of complex decision-making - and I brought up your observation that doctors are limited to the knowledge/anecdotes/heuristics that fit in their own heads. Why not employ some kind of machine intelligence to at least aid in diagnosis, double-check treatment plans, prevent medical errors, etc? My friend abruptly changed the subject and began waxing poetic about how his decades of experience allowed him to glean enormous amounts of information from the mere tactile sensations of a loop of bowel in his hand during surgery. How would a machine replicate that, he asked. The conversation wasn't even about robotics. I don't have a lot of faith that doctors - outside of a few pioneers - will begin using medical expert systems until they are forced to.

milesdyson_phd 9y ago
You bring up a great point. I think a lot of people, not just surgeons, would trust their own experience and intuition over AI (at least initially). Not to mention the whole human characteristic of resisting pretty much any sort of change (even if it's for the better). I think AI in medicine can be great, especially if you start using it to augment a physician by keeping them up to date with the most recent research/papers/literature on a given topic.
lefstathiou 9y ago
I've had this conversation with doctors quite a bit. The missing link, in my opinion, is that the mind is an incredible tool only made better with good data. I don't think you or anyone is advocating to replace doctors with a TI-86, we just want data driven / supported decision making and I just can't figure out why we can't bridge that little gap. I have a spreadsheet that I actively log the total amount of time I spend with my doctors and their staff when I see them in person. All I am going to say is god bless nurse practitioners.
- jonlucc 9y ago
  Before, lots of data was based on billing codes, which are a total mess. With electronic medical records, now they can finally collate the data in a meaningful way. Dr. Atul Butte is doing that at UCSF for the entire UC system, but it just didn't exist before a year ago. I just saw a presentation of his a few weeks ago, and he's digging into stuff like "why are there hundreds of treatment paths in the first 12 months for patients diagnosed with T2D at UC hospitals?"
slededit 9y ago
A gentleman's hands are already clean - no need to wash before a procedure.

mistersquid 9y ago

Thank you for sharing these details. It's helpful to know details about aggressive therapeutic regimens doctors might suggest. Excuse me if I am intruding and do please disregard my question if you prefer not to answer. I'm presuming your sister did not follow the therapeutic regimen recommended to her. If this is the case, would you mind sharing what treatment she did pursue and whether she is currently in remission? In any case, I hope your sister is well as she can be. I hope also that you and the rest of your family remain healthy despite your genetic predisposition.

lefstathiou 9y ago
I appreciate the kind words and don't mind chatting about it at all. My sister taught me that it is much better to talk about these things as it could save someone's life someday. She did take the treatment and the cancer is in remission. I am happy to chat about this and she is as well to the extent you wish to go straight to the source. After her recovery, she organized a group of young mom's that meet regularly to help each other cope with cancer (and what she considers to be the more onerous issue - the thought of not seeing your kids grow up).