October 05, 2006

The Right to Know What Child one is Carrying

babyscan.jpgThis CNE
Health blog
was about ultrasound sex determination. In some places
hospitals give screenings to parents but refuse to tell the sex of the
child, out of fear that this would lead to gender selection. I would
argue this is wrong, both in terms of withholding desired information
from patients, due to the often racist undertones of the
anti-selection reasoning (it is often constructed as being ethnicity
specific) and as protection of the children. After all, the parents
can always go to a private clinic to get an extra scan which only
results in a bit of unnecessary, potentially unhealthy ultrasound and
a loss of money for the parents. In fact, forcing parents who think
the sex matters to do something extra to learn it is likely to make
them consider this information more salient, not less.

In general sex selection does not appear to be very prevalent in
western culture except as "family balancing" where parents want an
equal number of children of each sex. If an ethnic minority desires
more boys it may actually be undermining itself: it would either mean
losing in size or require marrying outside women, which presumably
would introduce other cultures into the ethnicity (unless of course
one assumes that women always slavishly adapt to their husband's
culture, a highly doubtful assumption). So maybe from an integration
perspective one should encourage sex selection?

In general the issue brings up an interesting question: what are the limits to medical self-knowledge and information about the child one is carrying? Today most medical systems are somewhat paternalistic about it, preferring not to offer a lot of information. Some of this is due to resource limits (tests do cost), much appears to be the assumption that patients cannot handle it properly and will become hypochondriac or just confused. But ethically it seems that we have a right to know about ourselves - even when this might be bad for us. Outsiders do not understand ourselves as well as we do, even if our self-knowledge is always limited. Our actions must be guided by the knowledge and values we have, including the action of acquiring more knowledge for future actions. Limiting this acquisition limits our ability to act morally. Hence, if the medical system retains a monopoly on this information and refuses to divulge it, it is acting wrongly (we might still have to pay for it, though - there is no right to have medical information paid for by taxpayer money). The proper thing to do would be to create institutions, whether extensions of genetic counseling to other forms of tests or health consumer services, that helps us make sense of and handle the information. How they should be formalised and paid for is a matter for another post (and a lot of deep thinking).

It seems to me that given the above reasoning we also should have a right to know everything about the baby. Prepersons do not have a right to privacy, and even children do not seem to be regarded as having a right to privacy. My general heuristic for rights is that you should get a right when you can understand it and desire it. This suggests that the right to social privacy emerges sometime around 10 years of age or so. But the right to medical privacy is more subtle, and likely to come a few years later. So learning everyhting there is to know about one's baby is OK. Besides, any human will grow up surprising regardless of what we know about its starting conditions.

Posted by Anders3 at October 5, 2006 01:15 PM