Eugenics

1
Eugenics

• Professor Julian Savulescu

2
Chinese Maternal and Infant Health-care Law 1995

• originally framed as the Eugenics Law
• Article 10
• compulsory premarital check up
• if the couple is diagnosed as having a genetic
  disease of serious nature
• they can only marry if they agree to long term
  contraception or sterilisation

3
Maternal and Infant Health-care Law

• Article 16
• If a married couple suffer from a serious genetic
  disease, the physician will give medical advice
  and the couple will follow it, eg prenatal
  testing and TOP
• Voluntary?

4
Outrage

• Statement from The European Society of Human
  Genetics and The European Alliance of Genetic
  Support Groups
• We the undersigned, urge the Peoples Republic
  of China to change the Law on Maternal and Infant
  Health Care, effective June 1, 1995, so as to
  avoid compulsory childlessness on genetic
  grounds. Article 10 of this law is an abuse of
  genetic information and a violation of human
  rights.
• The statement then contains an appeal to Article
  16 of the Universal Declaration of Human Rights
  and Article 12 of the European Convention

5
Outrage

• Human Genome Organisation Ethics Committee
• Articles 9,10 and 16 did not protect their basic
  rights and to uphold their human dignity and
  integrity.
• The British, Dutch and Argentinian Genetics
  Societies chose to boycott the 18th International
  Congress of Genetics in 1998 in Beijing

6
Outrage

• compulsory exclusion of some parents and fetuses
  is unethical The danger lies not in the
  imposition of Western morality on China but in
  silence, the equivalent of consent.
• James M. Reichman, MD, Mayer Brezis, MD in Annals
  of Internal Medicine

7
Outrage

• the law as detailed is so lacking in its
  appreciation of human dignity
• The decision to bear a handicapped child must be
  the inviolable right of the parents and not
  subject to coercion, intimidation, or force.
• Peter Doherty, The Guild of Catholic Doctors,
  Hospital of St John and St Elizabeth, London

8
Outrage

• Everything that we rightly condemned in Nazi
  Germany which involved ethnic cleansing and the
  elimination of life that was regarded as
  substandard by the Nazi regime seems now to find
  at least some partial acceptance with respect to
  China we have a duty as members of the medical
  profession to show our total opposition to such
  murderous procedures.
• John Scotson, Letter to the Editor, The
  Lancet, Vol.346 (8973), August 19, 1995, p.509

9
Objections

• lack of definition of serious
• no impact on genetic disorders
• mandatory childlessness or prenatal testing and
  termination of pregnancy

10
The possibility of eugenics today in China

• mandatory maternal serum screening for Down
  syndrome and termination of high risk pregnancies
• would reduce the incidence of Down syndrome by 90

11
The Eugenics Movement

• Eugenics literally means well-born
• selective breeding
• population

12
Eugenics

• Eugenics has negative connotations in the West
  because of its history
• from the late 19th century until after the second
  world war, the eugenics movement in Europe and
  North America aimed to enhance the genetic pool
• by encouraging those judged to have a good
  genetic constitution to reproduce, and
• discouraging the genetically unfit from
  reproducing, sometimes by employing involuntary
  sterilisation.

13
Eugenics

• Criminality, psychiatric disease and mental
  retardation
• In the US, the first sterilisation law was passed
  in Indiana in 1907
• Next 10 years, 15 more states passed legislation
  which gave the power to sterilise habitual or
  confirmed criminals, or persons guilty of some
  particular offense, like rape.

14
Common Themes

• Degeneration
• Heritability of behavioural traits
• Thallosophillia love of the sea, which was sex
  linked as sea captains were male
• Eugenic ends improvement of the gene pool

15
What Was Wrong with the Eugenics Movement?

• the eugenics movement of the early twentieth
  century based on
• bad normative assumptions (racism)
• bad science
• Unfit human traits such as feeblemindedness,
  epilepsy, criminality, insanity, alcoholism,
  pauperism and many others run in families and are
  inherited in exactly the same way as color in
  guinea pigs. Chart at a Kansas Free Fair

16
What Was Wrong with the Eugenics Movement?

• it interfered with individual liberty forced
  sterilisation BUT ALSO
• Bad science
• the problems were not genetic
• the interventions would have little effect
• Bad sociology
• Social darwinism
• Racism
• US legislation was used by Nazis to enact
  eugenics legislation which was the first step
  part of the T4 program and the concentration camps

17
Eugenics

• What was objectionable about eugenics was that it
  rode roughshod over private human rights.
• history has taught us that concern for
  individual rights belongs at the heart of
  whatever strategems we may devise for deploying
  our rapidly growing knowledge of human and
  medical genetics.
• Kevles, J. Eugenics and human rights. BMJ
  1999319435-8.

18
Procreative Liberty

• Procreative autonomy couples should be free to
  decide, when and how to procreate, and what kind
  of children to have
• Non-directive counselling

19
What was wrong with eugenics?

• Harm and loss of procreative liberty limits of
  harm to the individual for the benefit of others
• Replacement not therapy moral status of human
  life
• Value pluralism difficulty in defining a good
  or better life
• Statism involvement of the State
• Injustice to poor and disadvantaged

20
Eugenics Today

• Prenatal Screening, eg Down syndrome
• Preimplantation Genetic Diagnosis
• Acceptable because consistent with a principle of
  respect for procreative liberty

21
Unacceptable Contemporary Eugenics

• Human Fertilisation and Embryology Act
  restricting late abortion to serious fetal
  abnormalities
• HFEA restriction of access to PGD to serious
  medical disorders
• Inconsistent with procreative liberty indirect
  eugenics

22
Eugenics Today Survey of Attitudes in Ultrasound
to TOP

• Approx 50 possible respondents
• 41 responses
• Do issues related to TOP arise in your work?
• 33 answered yes
• 8 did not answer

23
Survey of Attitudes in Clinical Genetics to TOP

• 60 responses
• 31 Clinical Geneticists
• 23 Genetic Counsellors
• 5 Other
• 1 did not answer
• Do issues related to TOP arise in your work?
• 55 answered yes
• 5 did not answer

24
Ultrasound
25
Ultrasound
26
Clinical Genetics
27
Clinical Genetics
28
Conclusions

• Conclusions
• Fewer people support termination of pregnancy or
  would facilitate TOP at 24 w compared with 13 w
  for any condition
• The difference is most marked for pregnancies
  which are normal or involve a mild disorder

29
Definitions

• Definitions
• late termination of pregnancy (LTOP)
• at or after 20 w
• early termination of pregnancy (ETOP)
• before 20 w

30
Central Claims

• Major claim limiting LTOP to major abnormalities
  is eugenic
• There is no justification for the current eugenic
  approach to LTOP
• Minor claim there is no morally relevant
  difference between ETOP and LTOP

31
Eugenics

• Eugenics well-born, selective breeding
• Attempting to determine who is born to bring
  about a healthier or better population
• Especially by coercion or limiting options
  available
• Especially State sponsored

32
Current Practice

• After 16-20 weeks (late preg), only selective
  termination
• Major abnormality
• Lethal abnormality conservative position
• Eugenic termination of late preg (LTOP)
• attempting to ensure that healthier or better
  people are born
• State limiting options cant terminate normal
  pregnancy (cf have to terminate abnormal
  pregnancy)

33
Can Eugenic LTOP Be Justified?

• Can eugenic approach to late termination be
  justified?
• What happens at around 20 weeks to justify the
  change in practice after about 20 weeks?

34
After 20 weeks

• Fetus is viable
• Fetus is conscious

35
Moral Status at 20 weeks

• Chervenak, McCullough and Campbell
• at viability the fetus becomes a patient, to
  whom doctors have duties.
• rights or interest

36
Moral Status at 20 weeks

• Chervenak, McCullough and Campbell
• termination only appropriate for those anomalies
  
• lethal
• absence of cognitive capacity
• eg., trisomy 13, 18, renal agenesis,
  thanatophoric dysplasia, alobar holoprosencephaly
  and hydrancephaly

37
Moral Status at 20 weeks

• Assume fetus has an interest in living when it is
  viable or conscious.
• Does this justify eugenic termination of late
  preg?
• NO - we cannot kill children or adults with
  disabilities, even lethal ones
• Not thought to be morally justifiable to kill an
  anencephalic once it is born

38
Moral Status at 20 weeks

• Eugenic termination cannot be justified because
  it is wrong to kill any fetus after 20 weeks.
• Viability cannot ground interest in living
  adults have a right to life dependent on features
  about them and not on whether there happen to be
  means of saving their lives
• Consciousness cannot be sufficient for a right
  to life since other animals are conscious

39
Moral Status gt20 weeks

• Can eugenic termination of late preg be
  justified?
• Moral status of fetus
• Classical hedonism
• Maternal/Family interest

40
1. Moral Status of Fetus

• Permissive view fetus does not have interest in
  living until much later in preg or after birth
• Would allow TOP with major abnormalities after 20
  w
• But it cannot justify eugenic LTOP because
  permissible to terminate any pregnancy after 20
  weeks, normal or abnormal
• Current practice is discriminatory because it
  permits only the termination of late abnormal
  pregnancies, and not the termination of normal
  pregnancies

41
2. Classical Hedonism

• Good that happy beings are brought into existence
• Judaism Puru Urvu Go forth and multiply
• Genesis 817 After exiting from the Arc, God
  said to Noah and his family, and the animals,
  they may swarm the earth and be fruitful and
  multiply.

42
2. Classical Hedonism

• Assume maximum number of children per couple is
  10
• In so far as disease results in unhappiness
• It is better that 10 healthy children exist than
  9 healthy and one unhealthy
• But 10 healthy and 1 unhealthy may be better than
  10 healthy
• Classical hedonism may justify eugenic LTOP

43
Implications of Hedonism

• Implies we should take a eugenic approach to ETOP
  - only allow termination of abnormal pregnancies
• Implies it is wrong not to have children, eg,
  contraceptives

44
3. Maternal/family interest

• disabled children profoundly affect their parents
  lives
• because of these serious harms, it is justified
  to terminate pregancies where the fetus has a
  disability
• maternal/family interests justify termination of
  abnormal preg

45
3. Maternal/family interest

• But
• normal children profoundly affect their parents
  lives
• parents cannot kill disabled newborns, even if
  their own interests are severely compromised
• If the fetus does not have a right to life, then
  maternal/family interests would justify late term
  abortions of normal preg

46
Conclusion

• There is no justification for the current
  practice of eugenic termination after 20 weeks

47
Conclusion

• Either
• We allow late terminations of normal pregnancies
• permissive and maternal/family interest view
• We do not allow late terminations of pregnancies
  with major abnormalities
• fetus has moral status at 20 weeks view
• We do not allow early termination of normal
  pregancies (but allow termination of any abnormal
  preg)
• classical hedonism

48
Law

• No legal justification for ETOP or LTOP in terms
  of fetal abnormality in Vic and NSW
• for abortion to be lawful, it must be in maternal
  interests
• Any TOP, even for major abnormality, after
  viability may be Child Destruction
• untested in Australia
• Doctors are unlikely to be prosecuted
• But Crimes Act needs to be amended

49
Possible Defences of Indirect Eugenics

• Implies judgements of value of life
• Discrimination against genetically undesirable

50
Limits of Procreative Liberty

• Excessive Liberty in Reproduction

51
Rubella

• Mutated strain
• Resistant to vaccination
• Highly virulent
• Every pregnant woman affected
• Hundreds of thousands of severely disabled
  children
• Liberty to carry a disabled child?

52
Reasons Why Wrong

• Wrong conception of the good
• Abortion/embryo destruciton wrong
• Public interest

53
Limits of Procreative Liberty

• Public Interest and Reproduction
• Balance
• Public interest
• Liberty

54
What Was Right about Eugenics?

• Public Health movement
• reduction in incidence of birth defects is
  relevant consideration
• consideration of the costs of birth defects is a
  relevant consideration
• Down screening program Down syndrome is bad
• not merely to offer choice
• Concern for the Public Interest

55
Public Interest Principle

• It is right for A to interfere in Bs free choice
  to promote p in circumstances C.
• Public interest principle is where p stands for
  the public interest
• Examples
• Reporting of infectious diseases
• Containment and treatment of people with highly
  infectious diseases
• labelling of alcohol and cigarettes

56
Public Interest Constraints on Reproduction

• Universal principle R It is right for A to
  interfere in Bs free reproductive choice to
  promote p in circumstances C.
• Example Chinas one child policy
• It is right for Chinese authorities to interfere
  in individuals reproductive choices to ensure
  that each couple has only one child in
  circumstances of extreme overpopulation.

57
The Public Interest Thalassemia in Cyprus

• Currently, 50 of the blood supply goes to
  treating thalassaemia
• 20 of the drug budget
• If screening had not been introduced 15 years
  ago, there would have been 2.5 times as many
  people with thalassaemia

58
Mandatory Carrier Testing

• The Church must authorise marriage.
• Prior to doing this, couples must have
  thalassemia carrier testing
• No obligation to have prenatal diagnosis
• But the vast majority choose to have prenatal
  diagnosis
• Lesson coercive interventions are not required
  apart from information

59
Cyprus vs China

• Testing but not termination of preg is required
  in Cyprus
• Chinas law was more expansive marriage,
  contraception, childlessness, termination of
  pregnancy

60
Article 10

• Article 10 forces childlessness
• In a society in which people can only have one
  child,
• difference between being forced to have one
  healthy child vs being forced to have no children

61
Article 10

• Distinction between which children people have vs
  whether they have children
• Article 10 was significantly more restrictive of
  liberty
• too much weight to public interest and not enough
  weight to liberty

62
Coercion, Reproduction and the West

• Coercion to promote private interest in the West
• Forced Caesarean Sections
• Requirements for sperm donors to be identified
• Mandatory newborn screening PKU, hypothyroidism,
  CF (Guthrie spots)
• Syphilis/AIDS testing in pregnancy
• fortified cereals (folic acid)

63
Public Interest, Coercion, Reproduction and the
West

• Do we accept R in the West?
• Roe v Wade State has an interest in protecting
  life from the time of viability
• Compulsory genetic counselling
• Laws against consanguineous marriages
• Legislation preventing sex selection, gay/single
  women obtaining access to IVF
• Screening for intellectual disability in
  pregnancy Down Syndrome and Fragile X

64
When is coercion justified?

• What are circumstances c?
• Coercion is only justified in the public interest
  if
• there is a significant problem facing the
  community
• the intervention will be an effective way of
  promoting the public interest
• there is no alternative which is effective and
  less liberty restricting

65
Sliding Scale from Persuasion to Coercion

• Options
• Provide information
• Persuade people to access information
• Force information on people
• Persuade people to make choices
• Hard Coercion
• There have to be very good public interest
  reasons to go all the way to forced intervention

66
Hard Coercion

• Create Law
• Fines
• Imprisonment
• Removal of child?
• Bodily invasion sterilisation, Caesrean

67
Objections

• Doesnt public interest principle justify some
  instances of
• Forced Abortion
• Rape
• Torture
• Prisoners
• Innocent children

68
Response

• Yes
• But not in any likely real world situation
• Abortion
• Lethal contagious disease in fetus
• Rape
• Hard to imagine The Generals Daughter gang
  rape at West Point hushed up for army and women
  in the arm
• Torture
• Prisoners threat and likelihood of success
• Children not realistic

69
Part VI

• Applications in Reproduction

70
Screening for Intellectual Disability

• Serum screening and nuchal translucency for Down
  syndrome
• Picks up 90
• Risk free
• Provides information
• No right to ignorance
• Information promotes well-being and autonomy

71
Screening for Intellectual Disability

• Risk free screening should be compulsory on
• public interest grounds
• private interest grounds well-being and autonomy

72
Protecting Liberty

• Rights of disabled to have a disabled child
• Deaf
• Dwarf
• Employ persuasion and moral disapproval
• No justiifcation for further coercion
• No current significant public interest at stake
• Restrictions of procreative liberty are
  unjustified

73
Enhancement

• Could it ever be in the public interest to
  enhance?
• Disease resistance - like flouride in water,
  lipid lowering agents over the counter
• Simple intervention that increases everyones IQ
  yes, if uncontroversially good

74
Maternal and Infant Health Care Law

• Public Interest can be grounds for legislation
• Justifiability turns on
• the extent of the problem
• 30 million people with genetic disorders is
  significant.
• the extent to which this legislation will address
  the problem
• whether a less coercive option would address the
  problem in that particular country

75
A Distinction

• Distinguish between mandatory childlessness and
  what compelling a couple to have the healthiest
  child they can have, given that they can only
  have one child

76
Coercion
77
Is Ethics Relative?

• No
• Ethical principles are not relative to country or
  culture
• But relevant circumstances to the application of
  those principles are relative to countries and
  cultures
• For this reason, what is right in one country may
  not be right in another country

78
Relation of Resources to Protection of Public
Interest

• Protecting public interest is a valid reason for
  restricting liberty
• Resources can enable a country to protect the
  public interest without restricting personal
  liberty
• The point at which liberty is restricted for a
  given threat will vary from country to country -
  see graphs

79
The Wests Contribution

• the problem would not be so great if the West
  made cheap effective prenatal testing or
  screening available to a population
• the lesson from Cyprus is that coercion may not
  be necessary
• if you can only have one child, most people want
  a healthy one
• folate and spina bifida in Australia and the UK
• it has not been necessary to make folate mandatory

80
Part VII

• Further Applications

81
Public Interest Principle

• No consent required
• Organ harvesting after death
• Using excess/spare/discarded organs and tissues
• Use of information for research purposes

82
Conclusion

• The Public Interest can make coercion justifiable
  in reproduction
• public interest is significant
• The level of coercion is the least necessary to
  promote the public interest

83
Conclusion

• First question to ask in reproductive decision
  making is whether there is a significant public
  interest at stake
• This defines the extent of reproductive liberty
• While hard coercion and restriction of liberty is
  justifiable, it is rarely justified at least in
  the West.
• More limited persuasion is justified
• Liberty is a necessity that sometimes must be
  foregone

84
Reading

• Buchanan, A., Brock, DW, Daniels, N., Wikler, D.
  From Chance to Choice, CUP, 2000, Ch. 2.