Transcript The Future of Tele-health, medicine and care

Eugenics a matter of the past?
Dr. Gregor Wolbring and Natalie Ball,
University of Calgary
Community Rehabilitation and Disability Studies
At Bristol , Nov.11, 2012
[email protected]
©Gregor Wolbring
/
Thank You to
The students that worked with me since 2008
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Setting the stage: The scope of eugenics
History till 1960
Contemporary 1960-today
Future
Driver of eugenic practices
The role of disabled people and their allies
Conclusion
Setting the stage: The scope of eugenics
The meaning of Eugenics
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We greatly want a brief word to express the science of improving
stock, which is by no means confined to questions of judicious
mating, but which, especially in the case of man, takes cognisance of
all influences that tend in however remote a degree to give to the more
suitable races or strains of blood a better chance of prevailing speedily
over the less suitable than they otherwise would have had. The word
eugenics would sufficiently express the idea… (Galton, 1883)
He furthermore describes eugenics as the “investigation under which
men of a high type are produced” (Galton, 1883) that aimed to “bring
as many influences as can be reasonably employed, to cause the useful
classes in the community to contribute more than their proportion to
the next generation” (Galton, 1904; p. 3, italics original).
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The continuum of eugenics
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Euthenics: Measures to improve the environment in order to improve
health, appearance, behavior, or well-being of
society.
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Euphenics: Measures to improve the individual or phenotype (the
body) by biological or medical means.
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Positive Eugenics
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Positive eugenics is aimed at increasing the number of desired
phenotypic and genotypic traits within the population (Fisher, 1917).
Traditionally, positive eugenics was achieved by encouraging those
with desirable traits to reproduce with one another; however, with
recent advances in scientific technologies, positive eugenics may also
be achieved through somatic interventions (somatic gene therapy) on
the embryo and fetus level, or through germ-line intervention (germ
line gene therapy) of the parents to be. In the future, positive eugenics
might be achieved through the synthesis of the desired genome from
scratch (synthetic biology) in combination with the artificial womb.
Because many genes are impacted by environmental factors,
elimination of environmental factors that impact genes negatively also
can be seen as fitting with the aim of positive eugenics.
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Negative Eugenics
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Conversely, negative eugenics aims to prevent and eradicate
‘unwanted’ genotypic and phenotypic traits within the population
(Ward, 1913). This could be achieved through prevention of
procreation of people with ‘undesirable’ traits, sexually sterilizing the
so-called ‘unfit’, preventing the birth of ‘undesirables’ through
prenatal diagnostics of the fetus and the follow up use of selective
abortion of fetuses with unwanted traits, as well as pre-implantation
diagnostics of the embryo with the selection of only embryos with the
desired genetic make-up. With recent advances in scientific
technologies, negative eugenics may also be achieved through somatic
interventions (somatic gene therapy) on the embryo and fetus level, or
through germ-line intervention (germ line gene therapy) of the parents
to be.
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The continuum of eugenics
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Given Galton’s understanding of eugenics , eugenic goals are not
bound to the past, nor is it required that they only target those we
labeled up to now as having deficiencies. Eugenic thinking can also
be applied to enhance humans beyond the normal through for example
somatic and germline genetic enhancement. The only prerequisite is
that these interventions give an advantage to the beyond the normal
enhanced over others and that this advantage is durable and benefits
the stock in the end.
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History
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On all sides it was urged that this defective germ plasm threatening to
overwhelm Civilization must be cut off at its source by preventing the
breeding at the mentally defective.
Some enthusiasts went so far as to suggest euthanasia as the only
practicable remedy. More sober students of the problem advocated,
sterilization as the way out, that is, rendering the
feeble-minded incapable of procreation.
Virtually everybody agreed that all the feeble-minded, except possibly
those who were sterilized or who had passed the
Child-bearing period, should be segregated in Institutions.
(Scientists have new plan for dealing with morons By Stanley P Davies, Ph.D.,
NYT May 31, 1925; "Executive Secretary 'New York State Committee on Mental
Hygiene
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According to the New York State Commission for Mental Defectives,
the number of mental defectives in New York State is at least 50,OO0.
New York State's institutions for the feeble-minded at present
accommodate only 6,000.
A recent survey of these [sterilization] laws showed that in only about
half of these States arc the laws even nominally in force. In New York
State only one operation was performed under the authority of Its
sterilization law. In a test case the law was held unconstitutional and
in 1920 it was repealed. Taking the country over, the total number of
persons, including insane, criminals and feeble-minded, who have
thus far been sterilized since the first State law was passed in 1907, is
about 4,000, and at these only some- 500 have been feeble minded.
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(Scientists have new plan for dealing with morons By Stanley P Davies, Ph.D.,
NYT May 31, 1925; "Executive Secretary 'New York State Committee on Mental
Hygiene
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If all detectives could be brought up in good homes they would
cease to be the social menace they are now. Half the cases which
appear before the New York City Children's Court are brought them
on account of improper guardianship, which means that they
have no home at all or that their home surroundings are such as to
turn into criminals any but the strongest characters. These findings,
give the key to the program now being developed for the control
of mental deficiency, This program is based on the assumption that
the majority of mental defectives will remain outside, of institutions,
and rightly so. It, therefore, is concerned largely with the training of
the feeble-minded, for community life.
(Scientists have new plan for dealing with morons By Stanley P Davies, Ph.D.,
NYT May 31, 1925; "Executive Secretary 'New York State Committee on Mental
Hygiene
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Society is at last coming to realize that although the feeble-minded
need guidance and social control. they can, with such guidance and
control, be made into social assets instead of social liabilities.
Indeed, it is becoming clear that society is indebted to many at the
feeble-minded for the performance of much useful, if
humble, labor In the world.
(Scientists have new plan for dealing with morons By Stanley P Davies, Ph.D.,
NYT May 31, 1925; "Executive Secretary 'New York State Committee on Mental
Hygiene
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Alberta Medical Bulletin Vol 2, No 7No 1
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Annual report of the Department of Public Health, 1966
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Alberta medical bulletin Vol 5 No 1
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Support of Eugenics- Timeline
Frequency of Nobel Laureates
Associated with Eugenics
Frequency of Nobel Laureates Supporting
Eugenics by Decade, 1901-2010
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5
4
Economist
Peace
Literary
Med Phys
Chemists
Physicists
3
2
1
0
Year
Support and Rejection of Eugenics
Nobel Laureates Openly Supporting Eugenics (by
year of prize awarded)
1. Svante Arrhenius (1903)
2. Philipp Lenard (1905)
3. Theodore Roosevelt (1906)
4. Rudyard Kipling (1907)
5. Wilhelm Ostwald (1909)
6. Alexis Carrel (1912)
7.Karl Gjellerup (1917)
8. Johannes Stark (1919)
9. Woodrow Wilson (1919)
10. Robert A. Millikan (1923)
11. George Bernard Shaw (1925)
12. Julius Wagner-Jaurreg (1927)
13. Hermann Joseph Muller
(1946)
14. Emily Greene Balch (1946)
15. Bertrand Russel (1950)
16. Winston Churchill (1953)
17. Linus Pauling (1954, 1962)
18. William B. Shockley (1956)
19. Joshua Lederberg (1958)
20. Peter Medawar (1960)
21. Francis Crick (1962)
22. James D. Watson (1962)
23. Konrad Lorenz (1973)
24. Gunnar Myrdal (1974)
25. Alva Myrdal (1982)
26. Mario Capecchi (2007)
27. Robert Edwards (2010)
Nobel Laureates Openly Rejecting Eugenics
1. Thomas Hunt Morgan
Support of Eugenics-Prize Categories
Number of
Nobel
Laureates
Supporting
Eugenics
Physics
Chemistry
Medicine and
Physiology
Literature
Peace
Economics
4
3
10
Nobel
Laureates
Supporting
Eugenics of
total Prize
Category (%)
2.13
1.90
5.10
Nobel
Laureates
supporting
Eugenics of
total Nobel
Laureates (%)
0.48
0.36
1.19
5
5
1
4.67
4.24
1.50
0.60
0.60
0.12
“Society has no business to permit degenerates to reproduce their kind....
Any group of farmers who permitted their best stock not to breed, and let
all the increase come from the worst stock, would be treated as fit inmates
for an asylum.”—Theodore Roosevelt, 1906 Peace Prizewinner
Davenport, C.B. (1913). Charles B. Davenport Papers. Department of Genetics, Cold
Spring Harbor: NY.
Image: http://nobelprize.org/nobel_prizes/peace/laureates/1906/roosevelt-bio.html
History 1960-today
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Dr. Gregor Wolbring ETC talk,
Ottawa, 2004
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“We have to take away from humans
in the long run their reproductive
autonomy as the only way to
guarantee the advancement of
mankind.”
—Francis Crick, 1962 Physiology
and Medicine Prizewinner
Wolstenholme G (1963). Man and his future: a CIBA foundation volume. Boston: Little, Brown. p. 274.
Image: http://nobelprize.org/nobel_prizes/medicine/laureates/1962/crick.html
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Dr. Margaret Thompson order of Canada member and former
president of the genetics society of Canada said as the
defending witness for the Alberta government in the Leilani
Muir sterilisation case "some causes off mental effectiveness
are hereditary and when the eugenics board was created there
was a real danger of passing on those causes because
contraceptive choices were limited. Today, people at risk off
inheriting or passing on a defect to their children have the pill
and other contraceptives available. They can seek genetic
counselling before a child is born and can abort a child likely
to be defective.“
Thomas, D. 1995. Geneticist defends sterilization in era before
the pill. Calgary Herald (June 29): A14.
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The US noble laureate Joshua Lederberg (and one time adviser
to Cetus Corporation) said in 1970 in front of the US. House
of Representatives that 25 percent of all hospital beds and
institution places are filled with patients whose illness was
more or less genetic in origin. These numbers would increase
as environmental pollution would increase over time the
genetic burden. Therefore as the most important ad hoc action
prenatal diagnostic combination with selective abortion has to
be advanced.
Joshua Lederberg, Biological Goal: Human Welfare in The
New York Times 12.1.1970 see also Joshua Lederberg,
Genetic engeneering and the amelioration of genetic defect in
Bio-Science (1970), 20;1307-1310
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Dr. Gregor Wolbring ETC talk,
Ottawa, 2004
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Helga Kuhse (Professor Monash university Melbourne
Australia) "failing to offer the methods to avoid the birth of
severely handicapped children required moral justification"
(weekend Australian 18 Nov. 1995)
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Parents of a child with unwanted disability have their interests
impinged upon by the efforts, time, emotional burdens, and
expenses added by the disability that they would not have
otherwise experienced with the birth of a healthy child.
Botkin J. Fetal privacy and confidentiality. Hastings Cent
Rep. 1995;25(3):32_39)
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There is nothing wrong with eugenics said Dr. F. Clark Fraser
founder of the genetics clinic at Montreal Children's Hospital
not long ago in an unusually bland interview with the Montreal
Gazette
(Carlson, Tucker; Eugenics, American Style; The Abortion of
Down Syndrome Babies; The Weekly standard December 2,
1996)
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Eike Kluge a professor of bioethics at the University of
Victoria and a member of the BC governments special
advisory committee on ethical issues is cited "it can be
socially responsible not to bring a child into the world who is
fated to suffer terrible from a genetic disease
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Mitchell, A. 1997. Clinic to sift out bad genes. Globe and Mail
(September 24): A1,A10.
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Table 4. -Beliefs About Genetic Counseling%
Statement
Prenatal Diagnosis useful for
prevention of disability
Need genetic counseling
before amniocentesis
Need genetic counseling
before MSAFP
Mothers
47
81
72
Genetic
counselors
78
100
86
Genetic counseling is unbiased 18
62
Cooley WC et al Am.J.Dis. Child 1990; 144 1112
Nurses
81
81
72
36
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“THE MAJORITY IN 24 COUNTRIES BELIEVED IT IS UNFAIR TO
THE CHILD TO BE BORN WITH A DISABILITY. 40% AGREED IN
USA, CANADA AND CHILE. 36% IN FINLAND AND UK; 33% IN
SWITZERLAND AND THE NETHERLANDS; 29% IN ARGENTINA,
27% IN AUSTRALIA 25% IN SWEDEN AND 18% IN JAPAN.”
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“IT IS SOCIALLY IRRESPONSIBLE KNOWINGLY TO BRING AN
INFANT WITH A SERIOUS [NO LEGAL DOCUMENT DEFINES
WHAT IS SERIOUS] GENETIC DISORDER INTO THE WORLD IN
AN ERA OF PRENATAL DIAGNOSIS.” MORE THAN 50% AGREED
IN SOUTH AFRICA, BELGIUM, GREECE, PORTUGAL, CZECH
REPUBLIC, HUNGARY, POLAND, RUSSIA, ISRAEL, TURKEY,
CHINA, INDIA, THAILAND, BRAZIL, COLUMBIA, CUBA, MEXICO,
PERU AND VENEZUELA. 26% OF US GENETICISTS, 55% OF US
PRIMARY CARE PHYSICIANS AND 44% OF US PATIENTS
AGREED.”
Wertz, DC. 1998. "Eugenics is Alive and Well," Science in Context 11. 34. pp 493-510 (p501).
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8)Tab 14a Wahrnehmung von Behinderungen
%Zustimmung fuer Antwort
A
Deutschland
57
Frankreich
34
Grossbritanien
80
Niederlande
26
Russland
57
Spanien
49
China
18
Indien
52
USA
65
A: Die Gesellschaft wird wahrscheinlich niemals angemessene Unterstuetzung fuer Menschen
mit Behinderungen zur Verfuegung stellen
Wolff G und Wertz D.C. und Nippert I Medgen 11 1999 308-318
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7)Tab 3 Fairness und Verantwortung bei der Familienplannung
%Zustimmung fuer Antwort
1
2
3
Deutschland
17
9
8
Frankreich
51
40 30
Grossbritanien 36
19 21
Niederlande
33
16 11
Russland
96
54 67
Spanien
58
40 45
China
94
81 93
Indien
100 96
96
USA
40
22 26
1: nicht fair gegenueber dem Kind
2: nicht fair gegenueber den anderen Kindern einer Familie
3: social unverantwortlich in der Aera der Praenataldiagnostik
Wolff G und Wertz D.C. und Nippert I Medgen 11 1999 308-318
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A study from 1994-1996 asked geneticists from China in regards to 26 conditions
whether they would counsel positive, negative or unbiased.
Table 3. How to counsel about termination for 26 conditions
Merkmal
Urge
Counsel
Be Unbiased
Counsel
Termination
Pessimistically
optimistically
Anencephaly
93
5
1
1
Life of mother in 77
12
8
3
danger
severe Spina
89
9
1
1
bifida
Cystic Fibrosis 82
13
4
1
Trisomy 13
91
7
1
1
Trisomy 21
90
7
2
1
Hurler-Syndrome 85
12
2
2
Achondroplasia 77
15
5
3
45,X
74
19
5
2
Huntington
73
21
4
2
Chorea
Toxoplasmosis of 61
25
9
5
the fetus
Sickelcellanaemi 67
24
6
3
a
XXY
72
20
4
4
Rape
67
18
13
2
Phenylketonury 68
18
8
6
HIV Infection of 62
17
11
10
the fetus
Rubella of the
57
26
12
5
fetus
Hypercholesterol 56
30
8
6
emia
Neurofibrimatosis 60
24
9
7
Predisposition to 51
33
12
4
mental illness
Cleft lip and
52/48
28/26
12/15
8/11
palate: girl/boy
Predisposition to 29
43
19
8
Alcoholism
Severe obesity 31
25
26
17
Predisposition to 27
40
22
11
Alzheimer
Undesired sex
6
2
30
62
(Mao X and Wertz DC in Clin Genet 1997: 52: 100-109 table 3 page 103)
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Characteristic
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Nondirecti Nondirecti Positive
ve
ve
Counselin
Counselin Counselingg (Eastg (East- (WestGermany
Germany Germany
Rape
78
77
5
Neurofibromatosis 60
64
25
Down-Syndrome 56
71
5
Achondroplasia 53
69
30
Sickle cell anemia 52
73
13
Cystic Fibrosis
51
74
-
Positive Negative
CounselingCounselin
(Westg (EastGermany Germany
Negative
Counseling
(WestGermany
6
29
9
20
16
8
17
15
39
17
35
49
17
7
20
11
11
18
Predisposition to 50
schizophrenia/bip
olar disorder
Huntington
49
Chorea
Hypercholesterole 49
mia
Severe Obesity 49
Alzheimer
48
Predisposition to 48
alcoholism
Klinefelter46
Syndrome
Toxoplasmosis 45
Fetal HIV
42
Infection
45,X
39
Rubella
37
Phenylketonurie 37
Hurler-Syndrome 32
Cleft lip/palate in 32
a female fetus
Cleft lip/palate in 30
a male fetus
Severe open
22
Spina bifida
Trisomy 13
13
Life of mother in 17
danger
Child of undesired 14
sex
Anencephaly
12
41
7
3
56
43
Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and
Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1,
1997 page 67, Table 2
75
12
13
39
12
66
23
28
28
6
56
58
53
49
47
50
40
38
47
2
5
2
4
4
0
40
44
58
10
2
61
67
23
13
19
12
32
45
20
21
40
57
47
61
32
56
7
51
66
57
6
49
1
67
5
56
12
68
2
3
37
4
38
1
30
70
68
-
2
55
-
2
78
43
17
32
-
1
1
83
83
57
67
13
86
87
-
-
29
-
-
88
71
Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and
Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1, 1997
35
page 67, Table 2
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Disease
Hurler-Syndrome
Trisomy 13
Cleft lip-palate of
female fetus
Severe open
Spina bifida
Cystic Fibrosis
Anencephalus
Sickelcellanemia
Hypercholesterol
emia
Predisposition to
Schizophrenia
Huntington
Chorea
Predisposition to
Alzheimer
Predisposition to
alcoholism
45,X
Down-Syndrome
XXY
Cleft lip-palate of
male fetus
Neurofibromatosi
s
Achondroplasia
Unwanted sex
HIV Infection of
the fetus
Toxoplasmosis
Rubella
Phenylketonury
A
18
5
85
B
13
13
13
C
69
82
2
D
79
88
5
8
10
82
80
32
3
47
54
21
8
18
17
47
89
35
29
63
90
36
33
71
26
3
7
65
24
60
81
24
16
24
17
11
60
16
2
36
67
30
7
53
23
24
30
57
82
18
24
15
13
19
3
69
4
5
73
17
18
59
16
14
16
67
68
25
82
82
45
Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and
53
27
20
28
Gerhard Wolff
Journal
of
Genetic
Counseling,
Vol. 6, No. 1,
43
21
36
52
1997 page 67,53 Table 242
23
31
A, urge parents to carry to term +emphasize positive aspects; B, try to be unbiased; C,
emphasize negative aspects + urge termination; D, have an abortion Column D
assumes that the problem is personal
Carnevale A, et al (1998): Am J Med Genet Vol. 75:No. pp 426-432 p.428
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Self Identity Security
Keyword
Google Scholar
Google
“Genetic risk” “Down
Syndrome”
1,490
46,300
“Genetic probability”
“Down Syndrome”
2
28
“Genetic likelihood”
“Down Syndrome”
2
11
22,600
1,790,000
Probability “Down
Syndrome”
5210
162,000
Likelihood “Down
Syndrome”
5440
183,000
0
0/0
0/0
1,110/660
risk “Down Syndrome”
Probability/Incident of Dwarfism
“Risk of Dwarfism"
achondroplasia"
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The International Society for Prenatal Diagnosis agreed that,
with appropriate genetic counselling, non-invasive prenatal
diagnosis can be helpful for women determined to be high risk
for Down’s syndrome but did not endorse the ad-hoc use for
women at lower risk.
Best Practice & Research Clinical Obstetrics & Gynaecology Eugene
Pergament, MD, PhD, FACMGa, , , Deborah Pergament, MA, MLS, JDb
Volume 26, Issue 5, October 2012, Pages 517–529
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Counseling about prenatal testing for congenital abnormalities
has become an increasing part of obstetric care in the
Netherlands. For a long period prenatal genetic counseling
was supposed to be done in a non-directive way (Williams et
al, 2002). Recently some authors argue that shared decision
making may be more appropriate in prenatal genetic
counseling (Van Staveren, 2011).
Prenatal genetic counseling: Future parents prefer to make decisions
together, using professional advice Linda Martin1, Sandra Van Dulmen2,
Evelien Spelten1, Eileen Hutton1 Prenatal Diagnosis, vol. 32, (2012), nr.
suppl.1, p. 105
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Although enhancing reproductive autonomy rather than
prevention should be regarded as the primary aim of
preconception care for genetic risks, directive counseling may
well be acceptable in exceptional cases, and prevention in the
sense of avoiding serious suffering may be an appropriate
objective of specific community-based preconception
screening programmes.
Preconception care and genetic risk: ethical issues Guido M. W. R. De
Wert & Wybo J. Dondorp & Bartha M. Knoppers J Community Genet
(2012) 3:221–228
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Non-directive counselling is intended to facilitate autonomous
decision-making and remove the clinician’s views regarding a
particular course of action .
However, recent research in genetic counselling raises
concerns that nondirective counselling is neither possible nor
desirable, and that it may not be the best way to facilitate
informed choice . We propose an alternative model of
information-sharing specific to prenatal screening that
combines attributes of the models of informative decisionmaking and shared decision-making
Information-Sharing to Promote Informed Choice in Prenatal Screening in
the Spirit of the SOGC Clinical Practice Guideline: A Proposal for an
Alternative Model Meredith Vanstone, BA,1,2 Elizabeth Anne Kinsella,
PhD,1 Jeff Nisker, MD, PhD, FRCSC2 J Obstet Gynaecol Can
2012;34(3):269–275
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Information-Sharing to Promote Informed Choice in Prenatal Screening in
the Spirit of the SOGC Clinical Practice Guideline: A Proposal for an
Alternative Model Meredith Vanstone, BA,1,2 Elizabeth Anne Kinsella,
PhD,1 Jeff Nisker, MD, PhD, FRCSC2 J Obstet Gynaecol Can
2012;34(3):269–275
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Traditionally, genetic counselling and antenatal screening
have been governed by the principle of non-directiveness. It is
widely understood to mean that the role of the person offering
testing should be that of information provider, rather than
decision maker, and that information should be presented in a
neutral, non-judgmental manner (Kessler 1997, Weil et al.
2006). However, there has been considerable debate in both
the medical and sociological literature about whether absolute
non-directiveness is professionally desirable or interactionally
achievable (Anderson 1999, Bosk 1992, Clarke 1991, Gervais
1993, Pilnick 2002, Shiloh 1996), since it potentially requires
both complete suspension of expert professional judgment
and an orientation to what may be heard as directive even if it
is not produced or intended as such.
‘Let’s have it tested first’: choice and circumstances in decision-making
following positive antenatal screening in Hong Kong Alison Pilnick1 and
Olga Zayts2 Sociology of Health & Illness Vol. 34 No. 2 2012 ISSN 0141–
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9889, pp. 266–282
Objective The aim of this research was to compare attitudes between
women from different cultural and/or religious backgrounds toward
prenatal diagnosis (PND) and termination of pregnancy (TOP) for 30
different conditions.
Methods A questionnaire examining parents’ attitudes toward PND
and TOP for 30 different conditions was completed by 100 Saudi, 222
UK-White, and 198 UK-Pakistani women. Comparison of overall
attitudes with PND and TOP between groups was carried out, and a
total score reflecting attitudes was obtained.
Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
in Saudi Arabia and the UK
Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*, Shenaz Ahmed2, Josephine
M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113
44
Results In general, there were positive attitudes toward PND among
the three groups surveyed. The attitudes of Saudi and UK-Pakistani
women toward PND were more favorable than UK-White women.
Overall, acceptance of TOP was lower than for PND. For the majority
of conditions, acceptance of TOP was highest in Saudi women and
lowest in UK-Pakistani women.
Conclusion Attitudes toward TOP were significantly different
between the three groups and may be influenced by cultural and/or
religious factors. Availability of social services, genetic counseling,
and rehabilitation centers may also influence attitude toward PND and
TOP.
Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
in Saudi Arabia and the UK
Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*, Shenaz Ahmed2, Josephine
M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113
45
Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women in
Saudi Arabia and the UK Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*,
Shenaz Ahmed2, Josephine M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113
46
Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
in Saudi Arabia and the UK
Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*, Shenaz Ahmed2, Josephine
M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113
47
Results In total, 1 972 058 births were registered (91% of the births
in 1997–2007). Mean prevalence of DS was 14.57 per 10 000 births
(95% confidence interval 14.43; 14.73); 85% of DS were live births.
No significant trend in overall prevalence of DS births was
observed (p = 0.385), in spite of a significant increase of mean
maternal age during the same period (p < 0.001). The increased
prevalence of DS births at ≥24 weeks among women ≥36 years of
age (p = 0.011) was offset by a significant increase in the proportion
of DS births at <24 weeks among women aged <36
years (p = 0.013).
Unchanged prevalence of Down syndrome in the Netherlands: results from an 11-year
nationwide birth cohort Helma B. M. van Gameren-Oosterom1*, S. E. Buitendijk2, C. M.
Bilardo3, Karin M. van der Pal-de Bruin1, J. P. Van Wouwe1and A. D. Mohangoo1
Prenatal Diagnosis 2012, 32, 1035–1040
48
the overall prevalence will remain stable, until the opportunities for
performing prenatal screening will change (e.g. by offering the test
costless or by replacing screening by noninvasive pregnant
diagnosis on fetal DNA).
Unchanged prevalence of Down syndrome in the Netherlands:
results from an 11-year nationwide birth cohort Helma B. M. van
Gameren-Oosterom1*, S. E. Buitendijk2, C. M. Bilardo3, Karin M.
van der Pal-de Bruin1, J. P. Van Wouwe1and A. D. Mohangoo1
Prenatal Diagnosis 2012, 32, 1035–1040
49
Results Twenty-four studies were accepted. The weightedmean
termination rate was 67% (range: 61%–93%) among seven
population-based studies, 85% (range: 60%–90%) among nine
hospital-based studies, and 50% (range: 0%–100%) among
eight anomaly-based studies. Evidence suggests that termination
rates have decreased in recent years. Termination rates
also varied with maternal age, gestational age, and maternal
race/ethnicity.
Prenatal diagnosis of Down syndrome: a systematic review of
termination rates (1995–2011) Jaime L. Natoli1*, Deborah L.
Ackerman2, Suzanne McDermott1 and Janice G. Edwards1
Prenatal Diagnosis 2012, 32, 142–153
50
The finding that anomalies associated with mental retardation are
poorly accepted by parents is supported by the high rate of TOP for
Down syndrome. This indication accounted for 39% of the total
number of terminations in our study. Screening and TOP have a
measurable impact on the incidence of live births of infants with Down
syndrome in France (Khoshnood et al., 2004). Data from the Paris
birth defects registry (Khoshnood et al., 2008) showed that, during the
past 20 years, the proportion of cases of trisomy 21 which were
diagnosed prenatally increased among women under 38 years of age
from 9.5 to 84.9% and that more than 90% of these diagnoses lead to
TOP.
Termination of pregnancy following prenatal diagnosis in France: how
severe are the foetal anomalies? Marc Dommergues1, Laurent
Mandelbrot2, Dominique Mahieu-Caputo3, Noel Boudjema4,
Isabelle Durand-Zaleski4* and the ICI Group-Club de m´edecine
foetale5 Prenat Diagn 2010; 30: 531–539.
51
Traditionally, prenatal diagnosis has not been successful in reducing
the births of affected children in Egypt, because the majority of
women undergoing prenatal diagnosis continued to have
affected pregnancies.
Results Twenty-four women (33.8%) were found to have affected
fetuses; 100% of these women opted to terminate the pregnancy.
The change in attitude towards termination of pregnancy was
related to in-depth counseling of the religious aspects towards
prenatal diagnosis and termination of pregnancy. Forty-eight
women (66.2%) with normal or carrier fetuses for b-thal requested
human leukocyte antigen typing of the fetal material to determine if
the fetus was a human leukocyte antigen match for their existing
thalassaemic siblings.
Prenatal diagnosis for thalassaemia in Egypt: what changed parents’ attitude? A. ElBeshlawy1*, A. El-Shekha2, M. Momtaz2 , F. Said3, M. Hamdy1, O. Osman2, S.
Meshaal3, T. Gafaar3and M. Petrou Prenatal Diagnosis 2012, 32, 777–7824 Prenatal
52
Diagnosis 2012, 32, 142–153
Results While only 33% of the sample indicated they would not
have prenatal testing, 75% were disinclined to terminate
their pregnancy if their fetus was affected.
Greater life satisfaction also was associated with being disinclined
to terminate pregnancy
Attitudes toward prenatal testing and pregnancy termination among a diverse population of
parents of children with intellectual disabilities†Miriam Kuppermann1,2,3*, Sanae Nakagawa
1, Shana Raquel Cohen4; Irenka Dominguez-Pareto4 Brian L. Shaffer5and Susan
D.Holloway4 Prenat Diagn 2011; 31: 1251–1258.
53
Attitudes toward prenatal testing and pregnancy termination among a diverse population of
parents of children with intellectual disabilities †Miriam Kuppermann1,2,3*, Sanae Nakagawa
1, Shana Raquel Cohen4; Irenka Dominguez-Pareto4 Brian L. Shaffer5and Susan
D.Holloway4 Prenat Diagn 2011; 31: 1251–1258.
54
A study conducted by the Canadian Royal Commissions on
New Reproductive Technologies found that, as a result of
pressure from hospital staff, one in four pregnant women felt
obliged to undergo amniocentesis. Of those pregnant women
whose fetus tested positive for a birth defect, one in three
believed she was more or less forced to have an abortion.
Glover, N.M. and S. J. Glover. 1996. Ethical and legal issue
regarding elective abortion of fetuses with Down Syndrome.
Mental Retardation 34 (4): 207 - 214.
55
Applied to pathology, the engineering know-how necessary to
clone a man could wipe out more than fifty sexlinked
hereditary diseases. mongolism, schizophrenia, diabetes,
dwarfism, muscular dystrophy and perhaps even
cancer could become things of the past. Genetic engineering
will soon make such conveniences as sex selection
in offspring a trivial matter. More complex refinements in
physiognomy and physiology via hybrid breeding are
sure to follow. An Eugenic Age is just around the corner.
Reason REASON August 1972 Parahuman Reproduction, Android Cloning,
The New Biology, Artificial Synthesis, Genetic Engineering, Brain Transfers
"The New Biology" (pp. 4-11) by Winston L. Duke [Winston L. Duke
7/17/2015
Dr. Gregor Wolbring ETC talk,
Ottawa, 2004
56
History 1960-today
57
“Soon it will be a sin for parents to have a child which carries the heavy
burden of genetic disease. We are entering a world where we have to
consider the quality of our children.”
—Robert Edwards, 2010 Physiology and Medicine prizewinner
Rogers, Lois. 1999. Having disabled babies will be 'sin', says scientist. Sunday Times (July 4). Image from :
http://nobelprize.org/nobel_prizes/medicine/laureates/2010/edwards.html
Medical versus social reason
Sex selection poses significant threats to the
well-being of children and siblings, the children’s sense
of self worth and the attitude of unconditional
acceptance of a new child by parents, so
psychologically crucial to parenting
Sex selection leads to the oppression of the people
with the unwanted sex leading to social injustice
Sex selection is a form of sex discrimination
Sex selection leads to the enhancement of sex
stereotypes which means that people will have certain
expectations towards people with one sex or another
Wolbring, G (2004) "Disability rights approach to genetic discrimination" in "Society and Genetic" Information:
Codes and Laws in the Genetic Era edited by Judit Sandor CPS books Central European University Press
ISBN: 963924175X
63
Medical versus social reason
Ability selection poses significant threats to the
well-being of children and siblings, the children’s sense
of self worth and the attitude of unconditional
acceptance of a new child by parents, so
psychologically crucial to parenting
Ability selection leads to the oppression of the people
with the unwanted ability leading to social injustice
Ability selection is a form of Ability discrimination
Ability selection leads to the enhancement of Ability
stereotypes which means that people will have certain
expectations towards people with one ability or
another
Wolbring (2012)
64
Best Practice & Research Clinical Obstetrics & Gynaecology Eugene
Pergament, MD, PhD, FACMGa, , , Deborah Pergament, MA, MLS, JDb
Volume 26, Issue 5, October 2012, Pages 517–529
65
Scientific and Technological advancements
• Un outil, une machine ce sont des organes, et des
•
organes sont des outils ou des Machines
(Canguilhem, 1952).
Tools and machines are kinds of organs, and organs
are kinds of tools or machines; translation from
(Hacking, 1998)).
CNS-ASU research,
education and
outreach activities
are supported by the
National Science
Ability expectation
68
69
70
universalsports.nbcsports.com
71
•
•
•
•
•
•
•
•
•
Artificial gut: Status: Developed successfully
Artificial Heart: Status: First fully implantable artificial heart
developed
Artificial blood: Status: Oxygen therapeutics under development
Artificial blood vessels: Status: Under trials for use in human
beings
Artificial bones: Status: Under clinical trials
Artificial Skin: Status: Researches on the way for generating a
real skin
Artificial Retina Status: Developed successfully, waiting for commercialization
Artificial limbs: Status: In the trials
Artificial body parts from Stem cells: Status: Prototypes developed, further
research on the way
•
•
Neuropharmaceuticals
• cogniceuticals
• emoticeuticals (propranolol against bad memory?)
neurodevices
• implants,
• Artificial Hippocampus a silicon chip implant that
mimics the hippocampus, an area of the brain known
for creating memories.
• brain-computer interfaces,
• Borg hive mind
BMI on the level of cells
“Ilulissat Statement Synthesizing the Future a vision for the
convergence of synthetic biology and nanotechnology”
“There is no technical reason the work performed on
nonmammalian Cyborg cells should not be applicable to
human cells. Nanosynbio moves the cyborgization towards
the cellular level and below. The nanoscale cyborgization
of cellular components and subcellular structures is the
logical extension of the organ and body part
cyborgization..”
The holy grail?
Synthetic Biology is
A) the design and construction of new
biological parts, devices, and systems,
and
B) the re-design of existing, natural
biological systems for useful purposes.
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Synthetic Biology:
Humans that photosynthesize
New biological pathways
Reversal of Aging
Disease Fighting
Implantable living battery for medical device. out of electric eel
cells.
beneficial bacterial infections programmed to augment
immunity, provide needed vitamins, etc.
cybernetics
self repair bodies
Programmed Organisms
changing behaviour
programmable pets
biological robots
syntho-eukaryotic cell
living self-repairing materials (inhabited by colony of
engineered cells)
Artificial Womb
“I think it's irresponsible “Once you have a way
not to try and direct
in which you can
evolution to produce a
improve our children,
human being who will
no one can stop it. It
be an asset to the
would be stupid not to
world.”
use it because
“My view is that, despite the
someone else will.
risks, we should give serious
Those parents who
consideration to germ-line
gene therapy. I only hope
enhance their children,
that the many biologists who then their children are
share my opinion will stand
going to be the ones
tall in the debates to come
who dominate the
and not be intimidated by
world.”
the inevitable criticism ... If
such work be called
—James Watson, 1962
eugenics, then I am a
Physiology and
eugenicist.”
Medicine Prizewinner
Hoppe B, Dugan D (Producers).
(2003). DNA [Videotape].
United States: Windfall
Productions Inc.
Watson, James D. (2004). DNA.
New York, NY: Alfred Knopf.
Image:
http://nobelprize.org/nobel_prizes/medicine/laureates/1962/watson-bio.html
Meaning of health
•
•
•
Health and Rehabilitation
So far, the very meaning of health and therefore treatment and rehabilitation
is benchmarked to the normal or species typical body . We expect certain
abilities in members of a species; we expect humans to walk but not to fly,
but a bird we expect to fly.
“Disease/ illness is defined as the species-typical sub-normative
functioning of biological systems.
Rehabilitation is a treatment or treatments designed to facilitate the process of
recovery from injury, illness, or disease to as normal a condition as possible.
81
•
•
Transhumanized model of health
Health in this model is the concept of having obtained maximum (at
any given time) enhancement (improvement) of one’s abilities,
functioning and body structure beyond species typical boundaries.
All Homo sapiens bodies – no matter how conventionally “medically
healthy” – are in ill health in need of constant Improvement
..Transhumanized model Rehabilitation
• Rehabilitation is a treatment or treatments designed to facilitate
the process of recovery from injury, illness, or disease to as
normal /optimum a condition as possible.
Enhancement Medicine
•
•
It will become an increasingly flourishing field of medicine
providing transhumanized remedies through surgery,
pharmaceuticals, implants, and other means (Wolbring
2005),
this will generate whole new medical jobs, such as ‘body
engineers’, ‘body designers’ and ‘body technomaintenance crews,’
Ableism driving health and rehab interventions in the
future
favouritism of beyond species-typical abilities while
labeling ‘species and sub species-typical, ‘less able’ people
as ‘impaired’ as in a diminished state of being with the
accompanying discriminatory and other negative reactions
New group: the Techno Poor/Unenhanced impaired and
Disabled
Transhumanized DALY:
DALY is a health gap measure developed with the intent to
give guidance for allocating medical health treatment dollars
(Murray CJL et al. 2002), to "curtail allocative inefficiency"
(Murray and Acharya 1997:703-730). Murray states,
“...individuals prefer, after appropriate deliberation, to
extend the life of healthy individuals rather than those in a
health state worse than perfect health” (Murray and
Acharya 1997:703-730).
Transhumanized DALY:
If we apply this notion to a transhumanized model of health
that quote would say,
“ individuals prefer, after appropriate deliberation, to
ENHANCE the life of healthy individuals rather than treat
those in a health state worse than perfect health.”
This position could be used to justify favoring
‘enhancement medicine’ over ‘curative medicine’ seeing
pure curative medicine to the species typical state as futile
and waste of health care dollars.
The driver of eugenic practices
The cultural dynamic of
Ability expectation (want)
and Ableism (need)
Ableism
•
•
•
The term ableism evolved from the disability rights movements
in the United States and Britain during the 1960s and 1970s
It questions the ableism that privileges ‘species -typical abilities’
while labelling ‘sub species-typical abilities’ as deficient, as
impaired and undesirable often with the accompanying
disablism (Miller, Parker, and Gillinson 2004), the lack of
accommodation enthusiasm for the needs of people and other
biological structures who are seen to not have certain abilities;
the unwillingness to adapt to the needs of ‘others
Ableism as such is not negative it just highlights that one
favours certain abilities and sees them as essential.
CNS-ASU research,
education and
outreach activities
are supported by the
National Science
Ableism
•
•
Individuals, households, communities, groups, sectors, regions,
countries and cultures cherish and promote certain abilities
while viewing others as non-essential (favoritism of abilities).
Ableism leads to an ability based and ability justified
understanding of oneself, one’s body and one’s relationship
with others of one’s species, other species and one’s
environment.
CNS-ASU research,
education and
outreach activities
are supported by the
National Science
Ableism






Ableism is one of the most societal entrenched and
accepted isms and one of the biggest enabler for other
isms
 Sexism
 Racism/Ethnicism/
 Caste-ism
 Age-ism
Ableism driven Speciesism
Ableism driven Anti-Environmentalism Anthropocentric
versus Biocentric; Ecuador first Biocracy
Gross domestic product (GDP)-ism
Consumerism
Productivity-ism
Competitiveness-ism
Wolbring (2010) Nanoscale science and technology and social cohesion for International Journal of Nanotechnology Int. J. Nanotechnol., Vol. 7, Nos. 2/3,
922010 pp
155-173
Ability expectation (want)
and Ableism (need): Moving beyond the species-typical
favouritism of beyond species-typical abilities while
labeling ‘species and sub species-typical, ‘less able’ people
as ‘impaired’ as in a diminished state of being with the
accompanying discriminatory and other negative reactions
According to Humanity+ formerly the World Transhumanist
Association,
“The intellectual and cultural movement that affirms the
possibility and desirability of fundamentally improving
the human condition through applied reason, especially by
developing and making widely available technologies to
eliminate aging and to greatly enhance human intellectual,
physical, and psychological capacities” (World Transhumanist
Association, 2003).
95
Self Identity Security
Keyword
Google Scholar
Google
“Genetic risk” “Down
Syndrome”
1,490
46,300
“Genetic probability”
“Down Syndrome”
2
28
“Genetic likelihood”
“Down Syndrome”
2
11
22,600
1,790,000
Probability “Down
Syndrome”
5210
162,000
Likelihood “Down
Syndrome”
5440
183,000
0
0/0
0/0
1,110/660
risk “Down Syndrome”
Probability/Incident of Dwarfism
“Risk of Dwarfism"
achondroplasia"
96
The International Society for Prenatal Diagnosis agreed that,
with appropriate genetic counselling, non-invasive prenatal
diagnosis can be helpful for women determined to be high risk
for Down’s syndrome but did not endorse the ad-hoc use for
women at lower risk.
Best Practice & Research Clinical Obstetrics & Gynaecology Eugene
Pergament, MD, PhD, FACMGa, , , Deborah Pergament, MA, MLS, JDb
Volume 26, Issue 5, October 2012, Pages 517–529
97
Best Practice & Research Clinical Obstetrics & Gynaecology Eugene
Pergament, MD, PhD, FACMGa, , , Deborah Pergament, MA, MLS, JDb
Volume 26, Issue 5, October 2012, Pages 517–529
98
Converging Technologies for Improving Human Performance:
Nanotechnology, Biotechnology, Information Technology and
Cognitive Science (NBIC)
The NBIC report used the term productivity over 60 times and
the term efficiency 54 times and the term competitiveness
29 times.
Coenen Schuijff, Smits, Klaassen, Hennen, Rader and Wolbring (2009) Human Enhancement Study for European Parliament; Directorate General for internal
policies, Policy Dept. A: Economic and Scientific Policy Science and Technology Options Assessments. This project was carried out by the Institute for
Technology Assessment and Systems Analysis (ITAS), Research Centre Karlsruhe, and the Rathenau Institute, as members of the European Technology
Assessment Group (ETAG).
100
What drives enhancement development?
Nature has published the results of their recent survey on
cognitive enhancement.
1427 individuals took the survey; 79% felt that healthy
people should be allowed to take cognitive enhancers.
When asked whether healthy children under the age of 16
should be restricted from taking these drugs,
unsurprisingly, most respondents (86%) said that they
should. But one-third of respondents said they would feel
pressure to give cognition-enhancing drugs to their children
if other children at school were taking them.
Nature 452, 674-675 (2008) Poll results: look who's doping
101
What drives enhancement development?
•
•
For many, enhancements promised by new and more
powerful technologies will be seen as a logical extension of
what is commonplace today, and it will be increasingly difficult
to draw a clear line between their uses for therapeutic
purposes and their use for enhancement. (AAAS webpage)
Although convergence, economic competition, and consumer
demand push in the direction of rapid HE development,
ethical, legal and policy concerns pull in the direction of a
more cautious approach. (AAAS webpage)
102
What drives enhancement development?
•
•
•
and some ethicists talk about the obligation to enhance
oneself beyond the species-typical
Harris, J. Enhancing Evolution The Ethical Case for Making
Better People; Princeton University Press: 2007.
Savulescu, J. New breeds of humans: The moral obligation to
enhance. Reproductive Biomedicine Online 2005, 10, 36-39.
103
What drives enhancement development?
•
•
•
•
•
•
•
, polls indicate that personal interest in or aversion to using
Human enhancement technologies depends on one’s
perceived social status, and how Human enhancement
would affect his/her competitive advantage.
Canton has identified several market pressures leading to
rapid development of HE technologies:
1) global competitiveness;
2) brain drain/depopulation economics;
3) national security concerns; and
4) quality of life/consumer life-style demands. (AAAS
webpage)
http://www.aaas.org/spp/sfrl/projects/human_enhancement
104
Conversation between Alex D and Paul Denton
Paul Denton: If you want to even out the social order, you have to change
the nature of power itself. Right? And what creates power? Wealth, physical
strength, legislation — maybe — but none of those is the root principle of
power.
Alex D: I’m listening.
Paul Denton: Ability is the ideal that drives the modern state. It's a
synonym for one's worth, one's social reach, one's "election," in the Biblical
sense, and it's the ideal that needs to be changed if people are to begin living
as equals.
Alex D: And you think you can equalise humanity with biomodification?
Paul Denton: The commodification of ability — tuition, of course, but,
increasingly, genetic treatments, cybernetic protocols, now biomods — has
had the side effect of creating a self-perpetuating aristocracy in all advanced
societies. When ability becomes a public resource, what will distinguish
people will be what they do with it. Intention. Dedication. Integrity. The
qualities we would choose as the bedrock of the social order. (Deus Ex:
Invisible War)
105
The role of disabled people
In Germany April 1933 , the [Reich Association of the Blind] RBV
published Kraemer’s pamphlet Kritik der Eugenik: Vom Standpunkt
des Betroffenen (Critique of Eugenics: From the Standpoint of One
Affected by It), which is the only well-founded critique of eugenics
written until that time in Germany by a disabled person. Kraemer’s
project was to unmask the ideological nature of eugenic conceptions
of inferiority. He warned against the coming Nazi Sterilization Law
and predicted that euthanasia of “useless” persons was the logical
consequence of eugenic thinking. Also, he critiqued eugenicists for
exaggerating the cost of caring for the impaired, for viewing impaired
people as necessarily suffering, and for overemphasizing the
importance of productive labor and military fitness.
Carol Poore | Recovering Disability Rights in Weimar Germany Radical History Review Issue 94
(Winter 2006): 38–58 http://rhr.dukejournals.org/cgi/reprint/2006/94/38.pdf
107
Table 9. Hit counts for various keywords in three academic journals: Disability & Society,
Disability Studies Quarterly and Review of Disability Studies.
Disability and Society
(1986-2011)
Eugenics
Sterilization
Genetic Counseling
Genetic Testing
Prenatal Screening
Prenatal Testing
Human Enhancement
Synthetic Biology
Gene Therapy
Genetic Engineering
Genetic Enhancement
103
33
12
15
16
11
2
0
5
14
0
Disability Studies
Quarterly (20002011)
66
23
7
4
5
10
1
0
1
7
0
Review of Disability
Studies (2004-2011)
29
12
2
0
0
4
1
0
0
0
0
108
Conclusion
We have the concept of
Military
economic security
food security,
health security,
environmental security,
personal security,
community security,
political security,
110
We Need to add
• Self Identity Security,
• Cultural Identity Security,
• Biological Diversity Security,
• Ability Security
•
Wolbring (2010) Ableism and Favoritism for Abilities Governance, Ethics
and Studies: New Tools for Nanoscale and Nanoscale enabled Science
and Technology Governance pp. 89-104 inThe Yearbook of
Nanotechnology in Society, vol. II: The Challenges of Equity and Equality
(Springer 2010) Susan Cozzens and Jameson M. Wetmore (eds.)
Self Identity Security
• I realised recently that I suffer from a genetic
condition. Although I have not actually had my
genome screened, all the anatomical signs of
Double-X Syndrome are there. And while I could
probably handle the myriad physiological
disorders associated with my condition bouts of
pain and bleeding coming and going for
decades, hair growth patters that obviously differ
from "normal" people's - the social downsides
associated with it are troubling.
When Medicine Goes Too Far. . . in the Pursuit of
Normality by Alice Dreger
http://www.gendercentre.org.au/26article4.htm
•
•
•
•
Citizenship
Citizenship can act as a force of exclusion as well as
inclusion
“Citizenship is a status bestowed on those who are full
members of a community. All who possess the status are
equal with respect to the rights and duties with which the
status is endowed” (3)
Many disabled people are not treated as full citizens and a
disabled people’s perspective is mostly absent from
contemporary debates on citizenship
Why?
Citizenship
•
•
•
In recent times many talk about the obligation, the duty
one has as a citizen.
Could the ableism of above be used to demand that
disabled people have the duty to become and behave as
species typical as possible
The Supreme Court of the USA ruled on the "definition of
disability" in three cases in the 1990’s stating that the
Americans with Disabilites Act does not cover those
persons with correctable impairments (1)
The Enhancement model of Citizenship
•
•
•
Different forms of ableism can be used to declare people
as ‘we’ or ‘others’.
Certain powerful people will generate a new ‘we’ making
the belonging and full citizenship dependent on people
having obtained certain ‘upgrades’ to their bodies. If not
they will be the ‘others’ not belonging and without full
citizenship. The treatment of these ‘techno poor impaired
and disabled’, the ‘Refuseniks’ and the ones who can’t
afford it, the new ‘others’ will follow today’s dynamic evident
around the as subspecies labelled so called impaired and
disabled ‘others’.
The ‘we’ versus ‘others ’ can play itself out non only within
a country and social structure but also between countries
and between different social structures
There is no indication that the ableisms
exhibited that let to the sterilizations at the
beginning of the 20th century and genetic
testing in second half of the 20th century will
not be used in the 21st century to justify and
shape policies around enhancements
7/17/2015
Dr. Gregor Wolbring ETC talk,
Ottawa, 2004
116
117