4 ms·

Sounds like pearl-clutching to me. The outrage is not over the ethics of what he did, which is a scant drop in the bucket compared to real-world concerns (e.g.

Sounds like pearl-clutching to me. The outrage is not over the ethics of what he did, which is a scant drop in the bucket compared to real-world concerns (e.g. Ughyrs). To claim the parental waiver being insufficient was the heart of the issue is disingenuous. Still, nice to remind us the technology is here, would love to hear how the kid is doing.

whatshisface 4y ago
The technology is definitely not here. Most attempts will result in the introduction of unpredictable mutations.
- altruios 4y ago
  ...Mutations? You mean advantages, surly? /s
- RobotToaster 4y ago
  There's no guarantee those mutations will be pathogenic though, most aren't.
  - whatshisface 4y ago
    The probability of a mutation being deleterious is so much higher than that of it being helpful that mutations are bad.
deleted 4y ago
[deleted]
j16sdiz 4y ago
CRISPR CAS9 is not precise and bring lots of unexpected mutations. That’s why currently it is only used for disease that have no other cure.
PragmaticPulp 4y ago
> To claim the parental waiver being insufficient was the heart of the issue is disingenuous. The article doesn’t claim that was the heart of the issue. It lists that as one of a multitude of issues.
JackFr 4y ago
> The outrage is not over the ethics of what he did, which is a scant drop in the bucket compared to real-world concerns (e.g. Ughyrs) Because someone is not outraged by what you are is not evidence of disingenuousness.
lo_zamoyski 4y ago
> a scant drop in the bucket compared to real-world concerns Objectifying human beings in such a radical way and arrogantly putting the human germline at risk isn't a real-world concern? You have a very strange grasp of real-world concerns.
SoftAnnaLee 4y ago
The ethical concerns were not just the parental waiver; but rather a number of issues. Such as implicit coercion (i.e. forcing subjects to pay exorbitant fines for backing out of the research; seeking out patients who may have no other options for IVF than this trial), inadequate communication of the risks that Gene Editing may have, and improper communication of the actual predicted effect of the trial (i.e. "your baby will be immune to HIV", rather than having a potential increased resistance to HIV). As for the ethics of gene editing itself, the risks of gene editing are poorly understood. Not in that we are ignorant of the risks, but rather that science does not have an understanding of what techniques of gene editing are effective. What therapies are effective. What therapies have side-effects, the intensity and fatalities of these side-effects. It would be one thing if the dimensions to these risks could be ballparked (e.g. with how HRT for gender affirmation, the risks of therapy vs abstinence are decently understood and communicated to a patient before starting due to the current understanding of the human endocrine system, and the track record of patients in the past). But since the current answers to these questions range from theoretical to mostly unknown, it is difficult to properly convey the risk. And caveat emptor is an irresponsible perspective to have of the risk, as one can not truly consent to a complete unknown; especially on the fetus and future person who has not yet been conceived. That said, I am in the opinion that in the case a person who understands the risk of no therapy is severe (i.e. a patient with a severely debilitating or fatal disorder or disease) or has a proper understanding of the lack of knowledge and risk of therapy (e.g. a geneticist who reads journals about these particular issues) then one can adequately consent. But the parents in this experiment were neither.

whatshisface 4y ago

The technology is definitely not here. Most attempts will result in the introduction of unpredictable mutations.

altruios 4y ago
...Mutations? You mean advantages, surly? /s
RobotToaster 4y ago
There's no guarantee those mutations will be pathogenic though, most aren't.
- whatshisface 4y ago
  The probability of a mutation being deleterious is so much higher than that of it being helpful that mutations are bad.

deleted 4y ago

[deleted]

j16sdiz 4y ago

CRISPR CAS9 is not precise and bring lots of unexpected mutations. That’s why currently it is only used for disease that have no other cure.

PragmaticPulp 4y ago

> To claim the parental waiver being insufficient was the heart of the issue is disingenuous. The article doesn’t claim that was the heart of the issue. It lists that as one of a multitude of issues.

JackFr 4y ago

> The outrage is not over the ethics of what he did, which is a scant drop in the bucket compared to real-world concerns (e.g. Ughyrs) Because someone is not outraged by what you are is not evidence of disingenuousness.

lo_zamoyski 4y ago

> a scant drop in the bucket compared to real-world concerns Objectifying human beings in such a radical way and arrogantly putting the human germline at risk isn't a real-world concern? You have a very strange grasp of real-world concerns.

SoftAnnaLee 4y ago

The ethical concerns were not just the parental waiver; but rather a number of issues. Such as implicit coercion (i.e. forcing subjects to pay exorbitant fines for backing out of the research; seeking out patients who may have no other options for IVF than this trial), inadequate communication of the risks that Gene Editing may have, and improper communication of the actual predicted effect of the trial (i.e. "your baby will be immune to HIV", rather than having a potential increased resistance to HIV). As for the ethics of gene editing itself, the risks of gene editing are poorly understood. Not in that we are ignorant of the risks, but rather that science does not have an understanding of what techniques of gene editing are effective. What therapies are effective. What therapies have side-effects, the intensity and fatalities of these side-effects. It would be one thing if the dimensions to these risks could be ballparked (e.g. with how HRT for gender affirmation, the risks of therapy vs abstinence are decently understood and communicated to a patient before starting due to the current understanding of the human endocrine system, and the track record of patients in the past). But since the current answers to these questions range from theoretical to mostly unknown, it is difficult to properly convey the risk. And caveat emptor is an irresponsible perspective to have of the risk, as one can not truly consent to a complete unknown; especially on the fetus and future person who has not yet been conceived. That said, I am in the opinion that in the case a person who understands the risk of no therapy is severe (i.e. a patient with a severely debilitating or fatal disorder or disease) or has a proper understanding of the lack of knowledge and risk of therapy (e.g. a geneticist who reads journals about these particular issues) then one can adequately consent. But the parents in this experiment were neither.