Wait, 30-50 years of good life followed by 15 years of less-good, then death. That's "negligent"? A negative-value life? It's only a few decades shorter than non-HD humans. I think I'll skip the other topic, as there's just no way to discuss it rationally.
Separately, legal and social rights/responsibilities are more about tradition and common perception than about logic. Actual personal moral choices that you make can be much more nuanced. There's no puzzle there. Public discussion still has a very low sanity waterline, and should be mostly ignored when trying to discover truth (including relative truth like morals and what works for how you should act).
Wait, 30-50 years of good life followed by 15 years of less-good, then death. That's "negligent"?
It's not comparing HD-life and no-life, but comparing HD-life and non-HD-life. I think it's obvious that HD-life is greatly worse than non-HD-life (otherwise HD wouldn't be considered a serious disease).
You might still disagree, and that gets us into the nonidentity problem.
No, the women in the story wouldn't create babies if she knows she has HD, so the comparison is HD-life and no-life.
When it comes to selective genetic testing the alternatives are dying at age -0.75 or dying at age 45 to 60 while suffering from symptoms in the years 15 before that. That doesn't even figure in future medical progress.
(Similar to meat consumption there is the question of marginal and game-theoretic elasticity of the supply of human babies)
Dying at age -0.75 counts as nothing, as a little, or counts as a lot of a person, depending on what counts as a person and how much a person at various stages matter. If it counts as a lot of a person, then it leads to an anti-abortion stance, and some pro-abortion arguments might apply in this situation.
And an alternative to abortion is adoption. A person that is highly unlikely to have HD could even be produced on demand by surrogacy or IVF, instead of being taken from the pool of people already up to adoption, so that it is a "net gain".
If the women would not even consider abortion or surrogacy as better alternatives than giving a high-risk natural birth, I consider that unreasonable and grossly negligent.
There's a reason very few people label themselvse as pro-abortion in the US. It's not even a position that's important enough that gallup asks about it. People who favor the right to abortion in the US generally label as pro-choice.
The general argument based on which abortion is legal in the US is about a woman's right to her own body being a very important sacred value that trumps the right to life of the fetus.
It's not that the fetus has no interest in living. It's rather that his preferences aren't that valuable given that he hasn't yet progressed enough in the direction of personhood to overrule the strong sacred value of bodily autonomy.
The US legal system does consider it reasonable to punish people who kill an unborn fetus of a woman without the consent of the woman and doesn't think the fetus counts for nothing.
Given the cheapness of genetic testing, if you take your own argument seriously the woman in question wouldn't be the only person with an obligation to stop the pregnancy from resulting in birth.
Separately, legal and social rights/responsibilities are more about tradition and common perception than about logic. Actual personal moral choices that you make can be much more nuanced. There's no puzzle there. Public discussion still has a very low sanity waterline,
Sure, but why is this relevant to bring up? It seems like the author of the post is attempting to work out a position on Huntington's Disease and its impact that is more consistent with their values than what is traditional or common. I get that you seem to disagree with the author's value assessment, but as you say this is a separate point although I'm confused as to what it's a point about (or maybe you just wanted to emphasize a fact? it's unclear to me).
Phrases like "gross negligence" are generally about legal or public judgement, and the title of the post says "power and duty". I took these to imply that the post is (at least partly) about these things. And the text didn't make the distinction very clearly, so I pointed out that they're different things which should be addressed separately. If that's unhelpful, I apologize. I was also confused by examples of withholding true information (from oneself or others) in order to be able to make a potentially-regrettable decision, which seem more like run-of-the-mill fuzzy thinking than legal or moral choices.
Basic facts about Huntington's Disease:
I was listening to a podcast about Huntington's Disease. In the podcast, there was a man with HD talking, and he said that his daughter had already had 3 children and doesn't want to test for HD, because
The child of a person with a 50% prior probability of having Huntington's disease, has a 25% probability of having Huntington's disease. As such, if parents have some legal duty to give their offspring a decent life, then for people with a high probability of Huntington's Disease to have children without doing genetic testing first, could be considered a form of gross negligence:
a conscious, voluntary act or omission in reckless disregard of a legal duty and of the consequences to another party.
This problem of gross negligence becomes even stronger when one considers the possibility of embryo genetic testing and selective abortion.
In 2018, a woman sued doctors, because they failed to tell her about her father’s fatal hereditary disease before she had her own child.
What is quite interesting in this case is that
The woman’s father shot and killed his wife in 2007 and was convicted of manslaughter. Two years later, doctors at St George’s Hospital in south London found he had Huntington’s disease and asked him to tell his daughter about his condition and her risk of developing it. But he refused to do so because he thought she might abort the child she was carrying. The doctors accepted his decision.
The behavioral aspects of HD are usually the first signs of this disease, and usually diagnosed as psychiatric: The frontal cortex and the criminal justice system (Sapolsky, 2000)
In a sizeable percentage of patients, these motoric symptoms are preceded a few years earlier by damage to the frontal cortex and associated changes in personality. Such changes typically involve marked social disinhibition, increases in aggressiveness and hypersexuality, patterns of impulsivity and poor social judgement.
HD has a surprisingly high level of prevalence (around 1 per 10000) despite its severe health consequences. This suggests that HD might have some evolutionary fitness that keeps it in the gene pool.
The behavioral aspects of HD noted in the last section plays well along the idea that people with HD have more children on average.
Pregnant people are subject to long lists of prohibitions and advises, to provide the best womb-environment. They often do it to themselves, but people around them also do that, because healthy offsprings is a social good, and thus enforcing the rules for making healthy offsprings is a social norm.
This prenatal norm enforcement can be seen as an extension of child-raising norm enforcement. Parents are required to give their children good food, shelter, education, medicine, emotional support, etc.
It's strange how many restrictions that pregnant women are being placed under: no alcohol, no thalidomide, no this no that, but 50% of Huntington's gene? That's possibly fine. This is odd.
An extension of the idea that parents have a duty to give their offsprings good lives, would give an argument for one form of eugenics as a duty of parents. Julian Savulescu is one particular advocate:
Principle of Procreative Beneficence (PB): couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well‐being.
As to the exposure of children, let there be a law that no deformed child shall live. -- Aristotle
The moral status of human fetuses and babies is not universal among humans. On one extreme, they are a special form of livestock, host animals in which a person gradually grows. On another extreme, they are 100% person, complete with a true unchanging self (some kind of preformationism). Intermediate positions vary widely, and are often used during abortion debates (Even though abortion debates are motivated by moral emotions, they are played out via moral philosophies.).
I remember reading a story about a future where people can live indefinitely from a genetic therapy before birth. But this failed on a newborn human, who would grow old and die in about 100 years. He became a global celebrity and his graceful death was televised. This started a wave of people who requested for their children to not receive the immortality genetic therapy.
The story is a celebration of antivaccination death cult, as well as illustrating a popular philosophical objection to vaccination: it is unnatural to be vaccinated against natural diseases.
I think this is connected. It shows that parents are thought to have a kind of total pseudorandom right over their offsprings, often called "reproductive right": a human social norm, whereby fertile humans can mate and produce offsprings anywhere and in any manner, as long as they are "natural". Heritable diseases, heritable mortality, they are all genetic and beyond human control, and thus considered natural.