Table 1

Suggested psychological benefits and dangers from childhood testing (various sources—largely adapted from Michie and Marteau7)

Result Possible danger Possible benefit
Faulty gene absentRejection by family, especially if others affectedAvoid clinical monitoring
False reassurance about health statusEmotional relief
Ability to plan life
Avoids effects of later disclosure
Avoids “preselection”1-151
Relieves anxiety about possible early signs of the disorder
Faulty gene presentImpair child's self esteemChild has time to adjust—avoids emotional problems of later disclosure
Impair child's long term adjustmentEnables parents to prepare child psychologically for the future
Impair relationship with parents (post-test changes in parental attitudes)Practical preparation for future, e.g. education, career, housing, etc
Stigmatisation/overprotectionChild can take informed decisions from early age
Discrimination in education, employment, insurance, mortgageAllows openness in families
Impair relationships with future partnersChild doesn't miss opportunity for testing
Removes autonomy to decline testingRelieves child's anxiety or uncertainty about the future
Confirms any “preselection”1-151 Relieves parents' anxiety or uncertainty
Could generate anxiety about early symptoms16 years may not be a good age to be tested
Parental distress/guilt?Beneficence1-150
?Lessens society1-150 discrimination
  • 1-150 Cohen25 argues that testing respects the principle of beneficence (it is not necessarily unethical for a parent to make choices for a child's welfare) and may lead to possible lessening of discrimination (as society realises that everyone carries “faulty genes”).

  • 1-151 Preselection—the concept that in some families persons are singled out for no rational reason as being the ones destined to develop the disorder. This can have adverse effects on the development of the “preselected” child.