The core idea behind confidentiality is to stop social pressure (whether on the children or the parents).
Parents have a strong right to not use genomic engineering technology, and if they do use it then they have a strong right to not alter any given trait.
How to prevent all the judgements better than to make information sharing completely voluntary?
Yeah this seems like an important question. I’m not sure what to think. Ideally someone with more background in medical ethics could address this. E.g. I’m not sure how to navigate what would happen if, for example, law enforcement claimed it needed access to some info (e.g. to enforce regulations about germline engineering, or to use in forensic investigation of a crime); or if there were a malpractice suit about a germline engineering clinic, or something. I’m also not sure what is standardly done, and what the good and bad results are, in situations where a child might have an interest in their parents not sharing some info about them.
But certainly, in a list of innovation-positive ethical guidelines for scientists and clinicians regarding germline engineering, some sort of strong protection of privacy would have to be included. This is a good point, thanks.
The core idea behind confidentiality is to stop social pressure (whether on the children or the parents).
How to prevent all the judgements better than to make information sharing completely voluntary?
Yeah this seems like an important question. I’m not sure what to think. Ideally someone with more background in medical ethics could address this. E.g. I’m not sure how to navigate what would happen if, for example, law enforcement claimed it needed access to some info (e.g. to enforce regulations about germline engineering, or to use in forensic investigation of a crime); or if there were a malpractice suit about a germline engineering clinic, or something. I’m also not sure what is standardly done, and what the good and bad results are, in situations where a child might have an interest in their parents not sharing some info about them.
But certainly, in a list of innovation-positive ethical guidelines for scientists and clinicians regarding germline engineering, some sort of strong protection of privacy would have to be included. This is a good point, thanks.