Should families own genetic information? YesBMJ 2007; 335 doi: https://doi.org/10.1136/bmj.39252.386030.AD (Published 05 July 2007) Cite this as: BMJ 2007;335:22
All rapid responses
The arguments presented in these discussions (both ‘yes’ & ‘no’)
assume an a priori knowledge that the family are all genetically related.
If this is not the case the index person may or may not know about it.
Either way the revelation of such information, through genetic testing,
may be highly destructive to the family. In the latter case, where the
index patient has chosen not to share such information, undertaking any
form of counselling or testing in other family members that might uncover
the truth, however inadvertently, rides roughshod over the index patients
autonomy. Surely, as argued in the ‘no’ case, the onus should be in the
index person to share the information with their family at their own
discretion. Counselling may help them in this regard.
The analogy presented in the ‘yes’ argument of the tin of beans is
flawed. It the case of the beans it is very unlikely that the others that
may be affected will have any interest in the index case. However, if a
person is approached and offered testing for a genetic disorder, they are
likely to want to know the reason for offering them the test. It would be
difficult to do this without identifying both the index case and the
condition. One may argue which is the right course here – but beans have
nothing to do with it.
I suggest that the limitations of these discussions have arisen
because of their brevity, the authors have not had sufficient space to
develop and explore their arguments. This perhaps reflects clinical
practice where the practical application of ethical principles fall short
of the ideal due to a lack of resources (usually time).
We all have to work within resources in our practice but it is
disappointing when we apply similar restrictions to published discussions
that should enhance our understanding and not risk compromising it.
Competing interests: No competing interests