Gregor Wolbring Presentation given at the Conference 'Sleepwalking into Eugenics', at MShed, Bristol, 10th November 2012

1. 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
gwolbrin@ucalgary.ca
©Gregor Wolbring
/

2. Thank You to
The students that worked with me since 2008
Christopher Powell, Seyyed Ghaderi, Jaskern Jaswanda, Brigid Burke,
Daniela Navia, Niklas Bobrovitz, Sibat Khwaja, Jenna Galloway,
Dana De Bok, Camila Sanchez, Adil Damani, Alshaba Billawala,
Kaitlyn O‘Brien,
Work with me in the moment
Angelica Martin, Verlyn Leopatra, Sophia Yumakulov, Emily
Hutcheon, Natalie Ball, Jacqueline Noga, Jeremy Tynedal,, Lucy
Diep, Brian Litke, Kalie Mosig
http://www.crds.org/research/faculty/Gregor_Wolbring.shtml
l
2

3. 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

4. Setting the stage: The scope of eugenics

5. The meaning of Eugenics
l 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)
l 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).
5

6. The continuum of eugenics
l Euthenics: Measures to improve the environment in order to improve
health, appearance, behavior, or well-being of
l society.
l
l Euphenics: Measures to improve the individual or phenotype (the
body) by biological or medical means.
l
6

7. Positive Eugenics
l ‗Positive‘ eugenics: increasing the number of desired phenotypic and
genotypic traits within the population (Fisher, 1917).
l Achieved through
l encouraging those with desirable traits to reproduce with one another;
l through somatic interventions (somatic gene therapy) on the embryo
and fetus level,
l through germ-line intervention (germ line gene therapy) of the parents
to be.
l Through elimination of environmental factors that impact genes
negatively
l In the future,
l through the synthesis of the desired genome from scratch (synthetic
biology) in combination with the artificial womb.
7

8. Negative Eugenics
l Negative eugenics aims to prevent and eradicate ‗unwanted‘
genotypic and phenotypic traits within the population (Ward, 1913).
l Achieved through
l prevention of procreation of people with ‗undesirable‘ traits,
l sexually sterilizing the so-called ‗unfit‘,
l 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.
8

9. The continuum of eugenics
l 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.
9

10. History

11. l 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.
l Indeed, it is becoming clear that society is indebted to many at the
feeble-minded for the performance of much useful, if
l humble, labor In the world.
l (Scientists have new plan for dealing with morons By Stanley P Davies, Ph.D.,
l NYT May 31, 1925; "Executive Secretary 'New York State Committee on Mental
Hygiene
11

12. l
Alberta Medical Bulletin Vol 2, No 7No 1 12

13. Support of Eugenics- Timeline
Frequency of Nobel Laureates Supporting
Eugenics by Decade, 1901-2010
6
Frequency of Nobel Laureates
5
Associated with Eugenics
4
3 Economist
Peace
2
Literary
1 Med Phys
0 Chemists
Physicists
Year

14. Support and Rejection of Eugenics
Nobel Laureates Openly Supporting Eugenics (by
year of prize awarded)
1. Svante Arrhenius (1903) 15. Bertrand Russel (1950)
2. Philipp Lenard (1905) 16. Winston Churchill (1953)
3. Theodore Roosevelt (1906) 17. Linus Pauling (1954, 1962)
4. Rudyard Kipling (1907) 18. William B. Shockley (1956)
5. Wilhelm Ostwald (1909) 19. Joshua Lederberg (1958)
6. Alexis Carrel (1912) 20. Peter Medawar (1960)
7.Karl Gjellerup (1917) 21. Francis Crick (1962)
8. Johannes Stark (1919) 22. James D. Watson (1962)
9. Woodrow Wilson (1919) 23. Konrad Lorenz (1973)
10. Robert A. Millikan (1923) 24. Gunnar Myrdal (1974)
11. George Bernard Shaw (1925) 25. Alva Myrdal (1982)
12. Julius Wagner-Jaurreg (1927) 26. Mario Capecchi (2007)
13. Hermann Joseph Muller 27. Robert Edwards (2010)
(1946)
14. Emily Greene Balch (1946)
Nobel Laureates Openly Rejecting Eugenics
1. Thomas Hunt Morgan

15. ―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

16. History 1960-today
Dr. Gregor Wolbring ETC talk,
11/15/2012 16
Ottawa, 2004

17. ―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

18. l 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.―
l Thomas, D. 1995. Geneticist defends sterilization in era before
the pill. Calgary Herald (June 29): A14.
18

19. l “
l 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.
l 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
Dr. Gregor Wolbring ETC talk,
11/15/2012 19
Ottawa, 2004

20. l Helga Kuhse (Professor Monash university Melbourne
Australia) "failing to offer the methods to avoid the birth of
severely handicapped children required moral justification"
l (weekend Australian 18 Nov. 1995)
20

21. l 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.
l Botkin J. Fetal privacy and confidentiality. Hastings Cent
Rep. 1995;25(3):32_39)
21

22. Table 4. -Beliefs About Genetic Counseling%
Genetic
Statement Mothers counselors Nurses
Prenatal Diagnosis useful for
prevention of disability 47 78 81
Need genetic counseling
before amniocentesis 81 100 81
Need genetic counseling
before MSAFP 72 86 72
Genetic counseling is unbiased 18 62 36
Cooley WC et al Am.J.Dis. Child 1990; 144 1112
22

23. l ―It is socially irresponsible knowingly to bring an infant with a serious
genetic disorder into the world in an era of prenatal diagnosis.‖
l
l More than 50% agreed in South Africa, Belgium, Greece, Portugal, Czech
Republic, Hungary, Poland, Russia, Israel, Turkey, China, India, Thailand,
Brazil, Colombia, Cuba, Mexico, Peru, and Venezuela
l 26% OF US geneticists, 55% OF US primary care physicians and 44% of
US patient agreed.‖
l Wertz, DC. 1998. "Eugenics is Alive and Well," Science in Context 11. 3-
4. pp 493-510 (p501).
l
Dr. Gregor Wolbring ETC talk,
11/15/2012 23
Ottawa, 2004

24. ―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

25. 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
25

26. 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
26

27. 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 27
Undesired sex 6 2 30 62
(Mao X and Wertz DC in Clin Genet 1997: 52: 100-109 table 3 page 103)

28. Characteristic Nondirecti Nondirecti Positive Positive Negative Negative
ve ve Counselin CounselingCounselin Counseling
Counselin Counselingg (East- (West- g (East- (West-
g (East- (West- Germany Germany Germany Germany
Germany Germany
Rape 78 77 5 6 17 17
Neurofibromatosis 60 64 25 29 15 7
Down-Syndrome 56 71 5 9 39 20
Achondroplasia 53 69 30 20 17 11
Sickle cell anemia 52 73 13 16 35 11
Cystic Fibrosis 51 74 - 8 49 18
Predisposition to 50 56 43 41 7 3
schizophrenia/bip
l Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and
olar disorder
Huntington 49 75 12 13 39 12
Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1,
Chorea
Hypercholesterole 49 66 23 28 28 6
mia
1997 page 67, Table 2
Severe Obesity 49
Alzheimer 48
56
58
49
47
40
38
2
5
4
4
Predisposition to 48 53 50 47 2 0
alcoholism
Klinefelter- 46 40 44 58 10 2
Syndrome
Toxoplasmosis 45 61 23 19 32 20
Fetal HIV 42 67 13 12 45 21
Infection
45,X 39 40 56 57 5 3
Rubella 37 57 7 6 56 37
Phenylketonurie 37 47 51 49 12 4
Hurler-Syndrome 32 61 - 1 68 38
Cleft lip/palate in 32 32 66 67 2 1
a female fetus
Cleft lip/palate in 30 30 70 68 - 2
a male fetus
Severe open 22 55 - 2 78 43
Spina bifida
Trisomy 13 13 17 - 1 83 57
Life of mother in 17 32 - 1 83 67
danger
Child of undesired 14 13 86 87 - -
sex
Anencephaly 12 29 - - 88 71
Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and
Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1, 1997
28
page 67, Table 2

29. Disease A B C D
Hurler-Syndrome 18 13 69 79
Trisomy 13 5 13 82 88
Cleft lip-palate of 85 13 2 5
female fetus
Severe open 8 10 82 80
Spina bifida
Cystic Fibrosis 32 21 47 63
Anencephalus 3 8 89 90
Sickelcellanemia 47 18 35 36
l Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and
Hypercholesterol
emia
54 17 29 33
Predisposition to
53 27 20 28
Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1,
Schizophrenia
Huntington
43 21 36 52
1997 page 67, Table 24
Chorea 2
Predisposition to
53 23 31
Alzheimer
Predisposition to 71 26 3 7
alcoholism
45,X 65 24 11 36
Down-Syndrome 24 16 60 67
XXY 60 24 16 30
Cleft lip-palate of 81 17 2 7
male fetus
Neurofibromatosi 53 23 24 30
s
Achondroplasia 57 24 19 4
Unwanted sex 82 15 3 5
HIV Infection of 18 13 69 73
the fetus
Toxoplasmosis 17 16 67 82
Rubella 18 14 68 82
Phenylketonury 59 16 25 45
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 29

30. l 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.
l 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.
l Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
in Saudi Arabia and the UK
l Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*, Shenaz Ahmed2, Josephine
M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113
30

31. l 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.
l 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.
l Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
in Saudi Arabia and the UK
l Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*, Shenaz Ahmed2, Josephine
M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113
31

32. 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
32

33. l Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
in Saudi Arabia and the UK
l Ayman Alsulaiman1, Jenny Hewison2, Khaled K. Abu-Amero3*, Shenaz Ahmed2, Josephine
M. Green4 and Janet Hirst5 Prenatal Diagnosis 2012, 32, 1109–1113 33

34. l Results Twenty-four studies were accepted. The weightedmean
termination rate was 67% (range: 61%–93%) among seven
l population-based studies,
l 85% (range: 60%–90%) among nine hospital-based studies,
l 50% (range: 0%–100%) among eight anomaly-based studies.
l Evidence suggests that termination rates have decreased in recent
years. Termination rates also varied with maternal age, gestational
age, and maternal race/ethnicity.
l Prenatal diagnosis of Down syndrome: a systematic review of
l termination rates (1995–2011) Jaime L. Natoli1*, Deborah L.
Ackerman2, Suzanne McDermott1 and Janice G. Edwards1
Prenatal Diagnosis 2012, 32, 142–153
34

35. 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.
35

36. l Attitudes toward prenatal testing and pregnancy termination among
a diverse population of parents of children with intellectual
disabilities
l Results While only 33% of the sample indicated they would not
have prenatal testing, 75% were disinclined to terminate
l their pregnancy if their fetus was affected.
l 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.
36

37. 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.
37

38. l Applied to pathology, the engineering know-how necessary to
clone a man could wipe out more than fifty sexlinked
l hereditary diseases. mongolism, schizophrenia, diabetes,
dwarfism, muscular dystrophy and perhaps even
l cancer could become things of the past. Genetic engineering
will soon make such conveniences as sex selection
l in offspring a trivial matter. More complex refinements in
physiognomy and physiology via hybrid breeding are
l sure to follow. An Eugenic Age is just around the corner.
l Reason REASON August 1972 Parahuman Reproduction, Android Cloning,
The New Biology, Artificial Synthesis, Genetic Engineering, Brain Transfers
l "The New Biology" (pp. 4-11) by Winston L. Duke [Winston L. Duke
Dr. Gregor Wolbring ETC talk,
11/15/2012 38
Ottawa, 2004

39. Self Identity Security
Keyword Google Scholar Google
“Genetic risk” “Down 1,490 46,300
Syndrome”
“Genetic probability” 2 28
“Down Syndrome”
“Genetic likelihood” 2 11
“Down Syndrome”
risk “Down Syndrome” 22,600 1,790,000
Probability “Down 5210 162,000
Syndrome”
Likelihood “Down 5440 183,000
Syndrome”
Probability/Incident of Dwarfism 0 0/0
“Risk of Dwarfism" 0/0 1,110/660
achondroplasia"
39

40. 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
40

41. Peter Singer in his book Rethinking life and death made the
case that thalidomide lead to the broader acceptance of
abortion (eugenic indication). The online version of this talk
has some German newspaper clips that highlight this
41

42. 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
42

43. • 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

44. 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)
44

45. 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 45

46. Scientific and Technological advancements

47. • 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

48. Ability expectation
48

49. 49

50. 50
universalsports.nbcsports.com

51. • 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

52. The holy grail?

53. 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.

54. 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)

55. Artificial Womb

56. ―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
human being who will children, no one can
be an asset to the
stop it. It would be
world.‖ stupid not to use it
―My view is that, despite the
risks, we should give serious because someone else
consideration to germ-line will. Those parents who
gene therapy. I only hope enhance their
that the many biologists who children, then their
share my opinion will stand
children are going to be
tall in the debates to come
and not be intimidated by the ones who dominate
Hoppe B, Dugan D (Producers). the inevitable criticism ... If the world.‖
(2003). DNA [Videotape].
United States: Windfall
such work be called —James Watson, 1962
Productions Inc. eugenics, then I am a Physiology and
Watson, James D. (2004). DNA.
eugenicist.‖
New York, NY: Alfred Knopf.
Image:
Medicine Prizewinner
http://nobelprize.org/nobel_prizes/medicine/laureates/1962/watson-bio.html

57. • 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.
57

58. Meaning of health

59. 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.
59

60. 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

61. ..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.

62. 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).

63. 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.

64. The driver of eugenic practices

65. The cultural dynamic of
Ability expectation (want)
and Ableism (need)

66. 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

67. 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

68. 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, 2010 pp
68
155-173

69. Ability expectation (want)
and Ableism (need): Moving beyond the species-typical

70.  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

71. Converging Technologies for Improving Human Performance:
Nanotechnology, Biotechnology, Information Technology and
Cognitive Science (NBIC)

72. 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).
72

73. 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)
73

74. 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
74

75.  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)
75

76. The role of disabled people

77.  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
77

78. Table 9. Hit counts for various keywords in three academic journals: Disability & Society,
Disability Studies Quarterly and Review of Disability Studies.
Disability and Society Disability Studies Review of Disability
(1986-2011) Quarterly (2000- Studies (2004-2011)
2011)
Eugenics 103 66 29
Sterilization 33 23 12
Genetic Counseling 12 7 2
Genetic Testing 15 4 0
Prenatal Screening 16 5 0
Prenatal Testing 11 10 4
Human Enhancement 2 1 1
Synthetic Biology 0 0 0
Gene Therapy 5 1 0
Genetic Engineering 14 7 0
Genetic Enhancement 0 0 0
78

79. Conclusion

80. We have the concept of
 Military
 economic security
 food security,
 health security,
 environmental security,
 personal security,
 community security,
 political security,
80

81. 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.)

82. David Werner