3 ms·

I don't actually think I'm missing that context. I'm just struggling to cross the giant gap between the baked in assumptions in my mind and the baked in assumpt

I don't actually think I'm missing that context. I'm just struggling to cross the giant gap between the baked in assumptions in my mind and the baked in assumptions out in the world and there never seems to be a good way to do that. Trying to be diplomatic about it ends up making me "look stupid." Trying to be confident about my views ends up making me look like a narcissistic and contemptuous asshole who thinks everyone else is stupid. My mental framing for the space is different than yours. That doesn't, per se, mean I'm wrong or stupid. My mental framing is rooted in having lived with a genetic disorder my entire life and having raised a child with the same disorder and getting diagnosed late in life. The problem space for a dominant genetic disorder like Huntington's Disease is fundamentally different from that for a recessive disorder. Mental models for how to address them should be fundamentally different as well. So telling me "That doesn't work for a dominant disorder" isn't really a valid rebuttal of anything I've said. I'm not suggesting it as policy for dominant disorders.

s1artibartfast 6y ago
I thought I cleared up your mental framing by addressing the question you had: >Maybe I am missing something and the plan here is to leave Sickle Cell trait alone and only subject people with Sickle Cell Disease To confirm, the plan here is to leave Sickle Cell trait alone and only subject people with Sickle Cell Disease to a change which will relieve their disease symptoms, but not change any heritability. I thought I addressed both recessive and dominant disorders in my comment and I validated your mate selection strategy as a personal choice. Where I disagree is (1) the idea that introducing a legal or social policy to address recessive disease is better than offering a medical solution and (2) that non-germline genetic modifications are morally questionable by their very nature. If your personal experience having lived with a genetic trait leads you to a different conclusion on the above points, I would be interested in hearing why. If you were saying something different that I entirely missed, I would also be interested.
- DoreenMichele 6y ago
  I'm really feeling "damned if I do, damned if I don't" and like leaving a reply to you or not leaving a reply are probably both equally bad options. I've decided to leave a reply on the very, very slim hope that I'm wrong about that. Social means to address serious conditions used to be the default norm for many things, such as STDs. Historically, if you turned up positive for an STD, a social worker asked you for the names and contact info of all recent sex partners, contacted them, let them know they had been exposed (or had possibly been the person who gave it to you) and offered them testing and treatment. That focus on social stuff in medicine has changed in recent years, in part because we have so much medical technology that we default to expecting people to go to a doctor's office or a hospital for testing and treatment. It used to be the norm that a physician visited your home with their little black bag and treated you there. I think that probably stopped being the norm when medical tech advanced to the point where you couldn't fit it all in a little black bag, basically. Doctors used to be the smartest and wisest people in a lot of communities. If they visited your home, they could get some idea of the real reason you were sick without asking you uncomfortable questions (like is the place a filthy pigsty). In addition to historical medical practices being pertinent to my thinking here, a lot of this falls under a broad category of issues that I think of as "human sexual morality." It's something I've thought a lot about over the years for a long list of personal reasons and it's very much my own set of mental models, so that makes it hard to talk about with anyone else and I tend to mostly not bother. As far as I can tell, "human sexual morality" is mostly about two things: 1. Trying to prevent economic disaster for both individuals and society and 2. Trying to prevent medical disaster for both individuals and society. There is currently a global pandemic on and we are currently imposing all kinds of restrictions on human behavior for such prosaic activities as going shopping in order to prevent the spread of disease. So it's a bit aggravating to be hearing in this current climate that someone has some big objection to behavioral intervention as a means to prevent disease. Some of what happened historically with regards to how we handle STDs and medicine generally in the US is that AIDS came along and in the US that was predominantly a disease infecting gay men and people using illegal IV drugs. Neither population wished to give up their contacts to social workers because they had a legitimate concern that it would be used to persecute gays and drug users. So they advocated for medical treatments for AIDS and HIV rather than the standard social intervention of the day of asking for the names of all the people who might have given it to you. And this became something of a turning point in how we handle disease. We increasingly look for a pill or surgery when we historically relied on things like monogamy, an expectation of virginity before marriage, shotgun weddings, social workers taking the names of your contacts, doctors visiting your home in person where they could casually see a lot of things about your life without asking that could inform their treatment decisions, etc etc. Medicine has veered into a dangerous area where human bodies get treated like some kind of specimen in a petri dish and where far too many people seem gripped with this deluded idea that your lifestyle has nothing whatsoever to do with your health outcomes and we presume that any kind of "official" intervention in your lifestyle choices is some kind of communist plot rather than a standard historical means to control disease. I wish we would focus on figuring out a better path forward, one that genuinely respects human rights more than our current default practices tend to do, while not obtusely acting like "health care" is solely about pills, vaccines and surgeries while diet, lifestyle and even social practices are off limits for trying to solve some of the problems we currently have.

s1artibartfast 6y ago

I thought I cleared up your mental framing by addressing the question you had: >Maybe I am missing something and the plan here is to leave Sickle Cell trait alone and only subject people with Sickle Cell Disease To confirm, the plan here is to leave Sickle Cell trait alone and only subject people with Sickle Cell Disease to a change which will relieve their disease symptoms, but not change any heritability. I thought I addressed both recessive and dominant disorders in my comment and I validated your mate selection strategy as a personal choice. Where I disagree is (1) the idea that introducing a legal or social policy to address recessive disease is better than offering a medical solution and (2) that non-germline genetic modifications are morally questionable by their very nature. If your personal experience having lived with a genetic trait leads you to a different conclusion on the above points, I would be interested in hearing why. If you were saying something different that I entirely missed, I would also be interested.

DoreenMichele 6y ago
I'm really feeling "damned if I do, damned if I don't" and like leaving a reply to you or not leaving a reply are probably both equally bad options. I've decided to leave a reply on the very, very slim hope that I'm wrong about that. Social means to address serious conditions used to be the default norm for many things, such as STDs. Historically, if you turned up positive for an STD, a social worker asked you for the names and contact info of all recent sex partners, contacted them, let them know they had been exposed (or had possibly been the person who gave it to you) and offered them testing and treatment. That focus on social stuff in medicine has changed in recent years, in part because we have so much medical technology that we default to expecting people to go to a doctor's office or a hospital for testing and treatment. It used to be the norm that a physician visited your home with their little black bag and treated you there. I think that probably stopped being the norm when medical tech advanced to the point where you couldn't fit it all in a little black bag, basically. Doctors used to be the smartest and wisest people in a lot of communities. If they visited your home, they could get some idea of the real reason you were sick without asking you uncomfortable questions (like is the place a filthy pigsty). In addition to historical medical practices being pertinent to my thinking here, a lot of this falls under a broad category of issues that I think of as "human sexual morality." It's something I've thought a lot about over the years for a long list of personal reasons and it's very much my own set of mental models, so that makes it hard to talk about with anyone else and I tend to mostly not bother. As far as I can tell, "human sexual morality" is mostly about two things: 1. Trying to prevent economic disaster for both individuals and society and 2. Trying to prevent medical disaster for both individuals and society. There is currently a global pandemic on and we are currently imposing all kinds of restrictions on human behavior for such prosaic activities as going shopping in order to prevent the spread of disease. So it's a bit aggravating to be hearing in this current climate that someone has some big objection to behavioral intervention as a means to prevent disease. Some of what happened historically with regards to how we handle STDs and medicine generally in the US is that AIDS came along and in the US that was predominantly a disease infecting gay men and people using illegal IV drugs. Neither population wished to give up their contacts to social workers because they had a legitimate concern that it would be used to persecute gays and drug users. So they advocated for medical treatments for AIDS and HIV rather than the standard social intervention of the day of asking for the names of all the people who might have given it to you. And this became something of a turning point in how we handle disease. We increasingly look for a pill or surgery when we historically relied on things like monogamy, an expectation of virginity before marriage, shotgun weddings, social workers taking the names of your contacts, doctors visiting your home in person where they could casually see a lot of things about your life without asking that could inform their treatment decisions, etc etc. Medicine has veered into a dangerous area where human bodies get treated like some kind of specimen in a petri dish and where far too many people seem gripped with this deluded idea that your lifestyle has nothing whatsoever to do with your health outcomes and we presume that any kind of "official" intervention in your lifestyle choices is some kind of communist plot rather than a standard historical means to control disease. I wish we would focus on figuring out a better path forward, one that genuinely respects human rights more than our current default practices tend to do, while not obtusely acting like "health care" is solely about pills, vaccines and surgeries while diet, lifestyle and even social practices are off limits for trying to solve some of the problems we currently have.