Gene Therapy & Ethics [was Re: AI Backlash]

Robert J. Bradbury (
Wed, 11 Aug 1999 10:48:31 -0700 (PDT)

> Paul Hughes <> wrote:

> As far as experimenting on children, I'm not sure people will have a problem
> with that either.. Most parents want their children to exceed themselves.
> Most often when parents have the money, they are all too willing to send
> them to the best private schools, music lessons, special tutors, etc.

> Not to mention, if I recall a Gallop poll showed that a surprising large
> percentage of parents would be willing to enhance the genome of their
> offspring, if the technology was available and reliable.

A few years ago I went to an ethics conference about gene therapy. The comments there, Paul's comments and Greg Stock's & John Campbell's work (presented by J. C. @ Extro4) regarding adding a Human Artificial Chromosome (HAC) to embyros to allow "activation" and/or insertion of genes at later life-points leads me to raise the following point.

Embryos, fetuses & children *cannot* give informed consent.

A fundamental principle of ethical medical practice (at this time, as compared with former times) is that before you do anything, you have to have informed consent. The more complex the procedure (and the more potential for something to go wrong), the more detailed the explanations must be by the physicians to the patient. Lawsuits abound when something goes wrong and it turns out that the information or consent process was faulty.

Now, in cases where an embryo or child is *unable* to make informed consent, the parents, or perhaps the state, are allowed to provide that consent. Presumably this is because they function as a proxy, acting in the interests of the other [potential] individual when they are unable to do so for themselves. In those rare cases where the parents are acting in the interests of their "beliefs" rather than the interest of the health of the [potential] individual, the state will sometimes override the parents' position. However, I think that most would agree, that the boundary between the interests of the child and the interests of the parent is a very fuzzy one. Many parents certainly believe their children are their "property" and/or manipulate children into doing things that the parent desires but the child at that time (or at some future point) may view as highly undesirable.

The *sticky* point in my mind is we are entering the time when treatments that are entirely "enhancements", rather than "necessities" are available. If the Extropian principles are those which should encourage diversity, minimize tyranny, manipulation/control by power bodies/majorities (including parents or medical authorities), etc., then it would seem to me that --
Extropians should be fundamentally opposed to all germline or childhood gene therapies that are not essential for the survival of the individual (to a time where they an give "informed consent").

Greg & John's work tries to balance on the edge of this by making the enhancements "selectable" or "enable-able", but they are still making a modification that the child would prefer not to have, should they, for whatever reason, grow up to be a human "naturalist",