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parents of severely disabled newborn infants should be able to
decide, together with their physician, whether their infant
should live or die. If the parents and their medical adviser are
in agreement that the infant's life will be so miserable or so
devoid of minimal satisfactions that it would be inhumane or
futile to prolong life, then they should be allowed to ensure that
death comes about speedily and without suffering. Such a decision
might reasonably be reached, if, for instance, an infant
was born with anencephaly (the term means 'no brain' and
infants with this condition have no prospect of ever gaining
consciousness); or with a major chromosomal disorder such as
trisomy 18, in which there are abnormalities of the nervous
system, internal organs, and external features, and death always
occurs within a few months, or at most two years; or in very
severe forms of spina bifida where an exposed spinal cord leads
to paralysis from the waist down, incontinence of bladder and
bowel, a build-up of fluid on the brain, and, often, mental
342
Appendix
retardation. (Were these conditions to be detected in prenatal
examinations, many mothers would choose to have abortions
and their decisions would be widely seen as understandable.)
Parents may not always be able to make an unbiased decision
concerning the future of their infant, and their decisions may
not be defensible. In some cases - Down's syndrome perhaps
- the outlook for the child might be for a life without suffering,
but the child would need much more care and attention, over
a longer period, than a normal child would require. Some couples,
feeling that they were not in a position to provide the care
required, or that it would be harmful for their already existing
family for them to try to do so, might oppose sustaining the
infant's life. There may, however, be other couples willing to
give the child an adequate home; or the community may be in
a position to take over the responsibility of providing medical
care and for ensuring that the child has reasonably good conditions
for living a satisfying life and developing his or her potential.
In these circumstances, given that the child will not be
living a life of unredeemed misery, and the parents will not be
coerced into rearing that child, they can no longer insist upon
having the major role in life or death decisions for their child. 10
This position is, of course, at odds with the conventional
doctrine of the sanctity of human life; but there are well-known
difficulties in defending that doctrine in secular terms, without
its traditional religious underpinnings. (Why, for example, if
not because human beings are made in the image of God, should
the boundary of sacrosanct life match the boundary of our species?)
Among philosophers and bioethicists, the view that I was
to defend is by no means extraordinary; if it has not quite
10 There is a brief account of my reasons for holding this position in Practical
Ethics, Chapter 7; and a much more detailed one in Helga Kuhse and Peter
Singer, Should the Baby Live? (Oxford University Press, 1985). See also Peter
Singer and Helga Kuhse, 'The Future of Baby Doe', The New York Review
(March l, 1984), pp. l7-22.
343
Appendix
reached the level of orthodoxy, it, or at least something akin to
it, is widely held, and by some of the most respected scholars
in the fields of both bioethics and applied ethics. II
Just a day or two before I was due to leave for Germany, my
invitation to speak at the Marburg conference was abruptly
withdrawn. The reason given was that, by agreeing to lecture
at the University of Dortmund, I had allowed opponents of my
views to argue that Lebenshilfe was providing the means for
me to promote my views on euthanasia in Germany. The letter
withdrawing the invitation drew a distinction between my discussing
these views 'behind closed doors with critical scientists
who want to convince you that your attitude infringes human
rights' and my promoting my position 'in public'. A postscript
added that several organizations of handicapped persons were
planning protest demonstrations in Marburg and Dortmund
against me, and against Lebenshilfe for having invited me. (Although
organizations for the disabled were prominent among
the protesters, these groups were strongly supported and encouraged
by various coalitions against genetic engineering and
reproductive technology, and also by organizations on the left
that had, apparently, nothing to do with the issue of euthanasia.
The 'Anti-Atom Bureau', for instance, joined the protests, presumably
neither knowing nor caring about my opposition to
uranium mining and nuclear power.)
The protests soon found their way into the popular press. Der
Spiegel, which has a position in Germany not unlike that of Time
11 Here is a selection; many more could be added: H. Tristram Engelhardt, Jr.,
The Foundations of Bioethics (Oxford University Press, 1986); R. G. Frey,
Rights, Killing and SUffering (Blackwell, 1983); Jonathan Glover, Causing
Deaths and Saving Lives (Penguin, 1977); John Harris, The Value of Life
(London: Routledge and Kegan Paul. 1985); James Rachels, The End of Life
(Oxford University Press, 1986); and Created from Animals (Oxford University
Press, 1991); Michael Tooley, Abortion and Infantidde (Oxford University
Press, 1983); and the book by Helga Kuhse to which I have already referred,
The Sanctity·ofLife Doctrine in Medidne: A Critique.
344
Appendix
and Newsweek in the United States, published a vehement attack
on me written by Franz Christoph, the leader of the self-styled
'Cripples Movement', a militant organization of disabled people.
12 The article was illustrated with photographs of the transportation
of 'euthanasia victims' in the Third Reich, and of
Hitler's 'Euthanasia Order'. The article gave readers no idea at
all of the ethical basis on which I advocated euthanasia, and it
quoted spokespeople for groups of the disabled who appeared

parents of severely disabled newborn infants should be able to

decide, together with their physician, whether their infant

should live or die. If the parents and their medical adviser are

in agreement that the infant's life will be so miserable or so

devoid of minimal satisfactions that it would be inhumane or

futile to prolong life, then they should be allowed to ensure that

death comes about speedily and without suffering. Such a decision

might reasonably be reached, if, for instance, an infant

was born with anencephaly (the term means 'no brain' and

infants with this condition have no prospect of ever gaining

consciousness); or with a major chromosomal disorder such as

trisomy 18, in which there are abnormalities of the nervous

system, internal organs, and external features, and death always

occurs within a few months, or at most two years; or in very

severe forms of spina bifida where an exposed spinal cord leads

to paralysis from the waist down, incontinence of bladder and

bowel, a build-up of fluid on the brain, and, often, mental

342

Appendix

retardation. (Were these conditions to be detected in prenatal

examinations, many mothers would choose to have abortions

and their decisions would be widely seen as understandable.)

Parents may not always be able to make an unbiased decision

concerning the future of their infant, and their decisions may

not be defensible. In some cases - Down's syndrome perhaps

- the outlook for the child might be for a life without suffering,

but the child would need much more care and attention, over

a longer period, than a normal child would require. Some couples,

feeling that they were not in a position to provide the care

required, or that it would be harmful for their already existing

family for them to try to do so, might oppose sustaining the

infant's life. There may, however, be other couples willing to

give the child an adequate home; or the community may be in

a position to take over the responsibility of providing medical

care and for ensuring that the child has reasonably good conditions

for living a satisfying life and developing his or her potential.

In these circumstances, given that the child will not be

living a life of unredeemed misery, and the parents will not be

coerced into rearing that child, they can no longer insist upon

having the major role in life or death decisions for their child. 10

This position is, of course, at odds with the conventional

doctrine of the sanctity of human life; but there are well-known

difficulties in defending that doctrine in secular terms, without

its traditional religious underpinnings. (Why, for example, if

not because human beings are made in the image of God, should

the boundary of sacrosanct life match the boundary of our species?)

Among philosophers and bioethicists, the view that I was

to defend is by no means extraordinary; if it has not quite

10 There is a brief account of my reasons for holding this position in Practical

Ethics, Chapter 7; and a much more detailed one in Helga Kuhse and Peter

Singer, Should the Baby Live? (Oxford University Press, 1985). See also Peter

Singer and Helga Kuhse, 'The Future of Baby Doe', The New York Review

(March l, 1984), pp. l7-22.

343

Appendix

reached the level of orthodoxy, it, or at least something akin to

it, is widely held, and by some of the most respected scholars

in the fields of both bioethics and applied ethics. II

Just a day or two before I was due to leave for Germany, my

invitation to speak at the Marburg conference was abruptly

withdrawn. The reason given was that, by agreeing to lecture

at the University of Dortmund, I had allowed opponents of my

views to argue that Lebenshilfe was providing the means for

me to promote my views on euthanasia in Germany. The letter

withdrawing the invitation drew a distinction between my discussing

these views 'behind closed doors with critical scientists

who want to convince you that your attitude infringes human

rights' and my promoting my position 'in public'. A postscript

added that several organizations of handicapped persons were

planning protest demonstrations in Marburg and Dortmund

against me, and against Lebenshilfe for having invited me. (Although

organizations for the disabled were prominent among

the protesters, these groups were strongly supported and encouraged

by various coalitions against genetic engineering and

reproductive technology, and also by organizations on the left

that had, apparently, nothing to do with the issue of euthanasia.

The 'Anti-Atom Bureau', for instance, joined the protests, presumably

neither knowing nor caring about my opposition to

uranium mining and nuclear power.)

The protests soon found their way into the popular press. Der

Spiegel, which has a position in Germany not unlike that of Time

11 Here is a selection; many more could be added: H. Tristram Engelhardt, Jr.,

The Foundations of Bioethics (Oxford University Press, 1986); R. G. Frey,

Rights, Killing and SUffering (Blackwell, 1983); Jonathan Glover, Causing

Deaths and Saving Lives (Penguin, 1977); John Harris, The Value of Life

(London: Routledge and Kegan Paul. 1985); James Rachels, The End of Life

(Oxford University Press, 1986); and Created from Animals (Oxford University

Press, 1991); Michael Tooley, Abortion and Infantidde (Oxford University

Press, 1983); and the book by Helga Kuhse to which I have already referred,

The Sanctity·ofLife Doctrine in Medidne: A Critique.

344

Appendix

and Newsweek in the United States, published a vehement attack

on me written by Franz Christoph, the leader of the self-styled

'Cripples Movement', a militant organization of disabled people.

12 The article was illustrated with photographs of the transportation

of 'euthanasia victims' in the Third Reich, and of

Hitler's 'Euthanasia Order'. The article gave readers no idea at

all of the ethical basis on which I advocated euthanasia, and it

quoted spokespeople for groups of the disabled who appeared