Using the Best Interests Standard to Decide Whether to Test Children for Untreatable, Late-Onset Genetic Diseases

Figures & data

TABLE 1 Suggested psychological benefits and dangers from childhood testing (Fryer, 2000, p. 284) ⁷

Result	Possible Danger	Possible Benefits
Faulty gene absent	Rejection by family, especially if others affected	Avoid clinical monitoring
		Emotional relief
		Ability to plan life
		Avoids effects of later disclosure
	False reassurance about health status	Avoids “preselection” [irrational views about who is destined to have the disease]
		Relieves anxiety about possible early signs of this disorder
Faulty gene present	Impair child's self esteem	Child has time to adjust – avoids emotional problems of later disclosure
	Impair child's long-term adjustment	Enables parents to prepare child psychologically for the future, e.g. education, career, housing, etc.
	Impair relationship with parents (post-test changes in parental attitudes)	Child can take informed decisions from early age
	Stigmatization/overprotection	Allows openness in families
	Discrimination in education, employment, insurance, mortgage	Child doesn't miss opportunity for testing; relieves child's anxiety or uncertainty about the future
	Impair relationships with future partners	Relieves parent's anxiety or uncertainty …
	Removes autonomy to decline testing
	Confirms any “preselection” [irrational views about who is destined to have the disease]
	Could generate anxiety about early symptoms

Fryer , A. 2000 . Inappropriate genetic testing of children . Archives of Disease in Childhood , 83 : 283 – 285 .

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