Difficult to determine the psychosocial harms and benefits of testing in childhood. A systematic review (Genetics in Medicine, 2015, doi:10.1038/gim.2015.181) found that serious adverse psychological outcomes were uncommon, and most studies reported no significant increase in mean anxiety, depression, and distress scores. However, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members’ health. It wasn’t very easy to anticipate adverse impact.
- No direct or medical benefit? Duty to protect the future autonomy of the child, i.e. preserving the right for the child to make her/his own decision to be tested or not.
- Possible psychosocial harm from knowing diagnosis? Existing guidelines are often based on assumptions rather than empirical evidence of such harm, viz possible lessened self esteem, distortion of the family’s perception of the child, altered upbringing, discrimination and increased anxiety both of parent and child.
On the other hand, it has been argued that parents have the right to make decisions on behalf of their children because they have primary responsibility for their child and they know their child best.
Similarly, not testing may mean that the child loses the opportunity to grow up with and adapt to genetic knowledge during his/her formative years. Plus, parental anxiety, difficulty of living with uncertainty.
The authors of the systematic review highlighted the lack of data regarding genetic testing for conditions that may not be treatable/modifiable, and the dearth of longitudinal studies. So they conclude that caution remains essential for the ethical integration of genetic testing in children.
British society for human genetics, 2013 report into testing children. http://www.ethox.org.uk/Documents%20and%20images/GTOC_2010_BSHG.pdf