Medical, ethical, legal and social issues in genetic - Bioethics ...

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ANNEX C
4. the tested individual may not be fully aware of the implications of testing and
suffers untoward consequences (e.g. misinterpretation of results leading to
unnecessary medical/social interventions).
To minimise the potential harm to the individual being tested, it is probably prudent to
continue to limit direct access to genetic testing. In reality, however, this may be
difficult to achieve as genetic tests are likely to be available in other countries. If the
local authorities limit local direct access, the motivated individual may still be able to
have access to direct testing by travelling to another country, for example, or by
requesting testing via the internet. One can only hope that genetic testing laboratories
will shoulder the onus of maintaining good standards of practice. Even then, one
wonders if the public would be able to discern and understand the significance of such
measures.
Genetic Tests and Vulnerable Groups
There are certain subgroups of the population that may be more likely to be harmed by
genetic testing. These individuals are usually considered to be vulnerable either because
(1) the person being tested is unable or incapable for providing consent (e.g. minors or
mentally incompetent individuals); or (2) there are concerns about the validity of the
consent (e.g. less educated persons, language issues, prisoners or students).
Minors with genetic diseases tend to fall into one of these groups:
1. Symptomatic at diagnosis;
2. Asymptomatic at evaluation, at risk of developing disease childhood/adulthood,
availability of intervention or treatment during childhood;
3. Asymptomatic at evaluation, at risk of developing disease adulthood, availability of
intervention or treatment only during adulthood; and
4. Asymptomatic at evaluation, at risk of developing disease, no intervention or
treatment available.
The issue of testing minors in groups (1) and (2) is quite clear; it is generally accepted
that these individuals can be tested because test results are likely to directly benefit
them. The issue of genetic testing in minors in groups (3) and (4) is more controversial.
The concern is that the person giving consent may have a vested interest in the outcome
of the genetic tests, and this interest may not be in the best interest of the child.
Moreover, one should also consider protecting the child’s right to make his/her own
decision when he/she is an adult. The counter argument is that science is rapidly
advancing and intervention or treatment in childhood may become available, and to
maximally benefit from such advancement, a person must know whether he has the
disease. This issue has been widely debated and it is generally felt that genetic testing
should not be performed in minors in groups (3) and (4). Every effort must be made to
protect the privacy of the child and his right “not to know” his genetic risk. 5,6
There are also other vulnerable groups that pose challenges to the medical community.
Mentally incompetent individuals are one such group. The physician needs to
determine that the legal guardian providing consent does not benefit more from the