Preventing Intellectual Disability: Ethical and Clinical Issues

Cover......Page 1
Half-title......Page 3
Title......Page 5
Copyright......Page 6
Contents......Page 7
Acknowledgements......Page 9
Case 2......Page 11
Case 4......Page 12
2 On the definition of intellectual disability......Page 18
Metaphors of intelligence......Page 19
Measuring intelligence......Page 22
The definition of the American Academy of Mental Retardation......Page 28
Boorse’s biostatistical theory of health......Page 29
Concluding remarks......Page 31
Research strategies in the epidemiology of intellectual disability......Page 33
Cohort studies......Page 34
Case-control studies......Page 35
Prevalence of intellectual disability......Page 36
Causes of intellectual disability......Page 37
Trends in the epidemiology of intellectual disability......Page 39
Levels of prevention......Page 41
Why should intellectual disability be prevented?......Page 42
Attitudes towards intellectual disability......Page 43
Labelling......Page 45
General strategies for the prevention of intellectual disability......Page 46
Ethical problems in the prevention of intellectual disability: introduction......Page 48
Prenatal causes......Page 49
Concluding remarks......Page 50
5 Prenatal diagnosis and screening......Page 51
History......Page 52
Methods......Page 54
Consent for prenatal diagnosis......Page 55
The reproductive autonomy model......Page 57
Response to a request......Page 59
Reassurance......Page 62
Who controls prenatal diagnosis?......Page 63
Impact on public health......Page 64
Economic argument......Page 66
‘Medical view’ argument......Page 69
Additional critical views......Page 70
Slippery slope......Page 71
Prenatal diagnosis and eugenics......Page 72
Impact on the disabled......Page 73
Concluding remarks......Page 77
6 Genetic counselling......Page 79
Goals......Page 80
When is genetic counselling successful?......Page 81
Directive or non-directive counselling?......Page 83
What is good genetic counselling?......Page 86
Geneticisation......Page 87
Behind geneticisation......Page 89
Consequences of geneticisation......Page 91
Concluding remarks......Page 93
7 Why should intellectual disability be prevented?......Page 96
Eugenic argument......Page 98
Foetal-wastage argument......Page 100
Family burden argument......Page 103
Sex selection......Page 106
A duty to abort?......Page 108
Cost—benefit analyses......Page 111
Incommensurability......Page 113
What is quality of life?......Page 116
Assessing quality of life......Page 119
Quality of life and intellectual disability......Page 121
Concluding remarks......Page 124
What is moral status?......Page 127
Life......Page 128
Sentience......Page 129
Personhood......Page 130
Relationships and moral status......Page 133
A multi-criterial approach to moral status......Page 135
Embryos and young foetuses......Page 137
Older foetuses......Page 139
Moral status after birth......Page 140
Newborns and young infants......Page 141
Children and adults with intellectual disability......Page 143
Concluding remarks......Page 145
Down syndrome......Page 146
Characteristics......Page 147
Epidemiology......Page 148
Development of prenatal diagnosis......Page 150
Attitudes towards Down syndrome......Page 152
Why should Down syndrome be prevented?......Page 153
Fragile X syndrome......Page 156
Prevention......Page 157
Ethical issues......Page 158
Aspartylglucosaminuria......Page 159
Prevention......Page 160
Ethical issues......Page 162
10 Conclusion......Page 163
Epidemiology......Page 164
Prenatal diagnosis and screening......Page 165
Genetic counselling......Page 166
Why prevent?......Page 167
Moral status......Page 168
References......Page 169
Index......Page 181