Dr. Gregor Wolbring and Natalie Ball,University of CalgaryCommunity Rehabilitation and Disability StudiesAt Bristol , Nov.11, [email protected] ©Gregor Wolbring
/
Eugenics a matter of the past?
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
Setting the stage: The scope of eugenicsHistory till 1960
Contemporary 1960-todayFuture
Driver of eugenic practicesThe role of disabled people and their allies
Conclusion
Setting the stage: The scope of eugenics
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The meaning of Eugenics
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
Euthenics: Measures to improve the environment in order to improve health, appearance, behavior, or well-being of
society. Euphenics: Measures to improve the individual or phenotype (the
body) by biological or medical means.
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Positive Eugenics
‘Positive’ eugenics: increasing the number of desired phenotypic and genotypic traits within the population (Fisher, 1917).
Achieved through encouraging those with desirable traits to reproduce with one another; through somatic interventions (somatic gene therapy) on the embryo
and fetus level, through germ-line intervention (germ line gene therapy) of the parents
to be. Through elimination of environmental factors that impact genes
negatively In the future, through the synthesis of the desired genome from scratch (synthetic
biology) in combination with the artificial womb.
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Negative Eugenics
Negative eugenics aims to prevent and eradicate ‘unwanted’ genotypic and phenotypic traits within the population (Ward, 1913).
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.
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The continuum of eugenics
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.
History
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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
Alberta Medical Bulletin Vol 2, No 7No 1 12
Support of Eugenics- Timeline
1901
-191
0
1911
-192
0
1921
-193
0
1931
-194
0
1941
-195
0
1951
-196
0
1961
-197
0
1971
-198
0
1981
-199
0
1991
-200
0
2001
-201
00
1
2
3
4
5
6
Frequency of Nobel Laureates Supporting Eugenics by Decade, 1901-2010
EconomistPeaceLiteraryMed PhysChemistsPhysicists
Year
Fre
qu
en
cy
of
Nob
el
Lau
reate
s A
ssocia
ted
wit
h E
ug
en
ics
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 Eugenics1. Thomas Hunt Morgan
“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
04/08/2023Dr. Gregor Wolbring ETC talk,
Ottawa, 200416
History 1960-today
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
“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
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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.
04/08/2023Dr. Gregor Wolbring ETC talk,
Ottawa, 200419
“
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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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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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
04/08/2023Dr. Gregor Wolbring ETC talk,
Ottawa, 200423
“It is socially irresponsible knowingly to bring an infant with a 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, Colombia, Cuba, Mexico, Peru, and Venezuela
26% OF US geneticists, 55% OF US primary care physicians and 44% of US patient agreed.”
Wertz, DC. 1998. "Eugenics is Alive and Well," Science in Context 11. 3-4. pp 493-510 (p501).
“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
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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
Termination Counsel Pessimistically
Be Unbiased Counsel optimistically
Anencephaly 93 5 1 1 Life of mother in danger
77 12 8 3
severe Spina bifida
89 9 1 1
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 Chorea
73 21 4 2
Toxoplasmosis of the fetus
61 25 9 5
Sickelcellanaemia
67 24 6 3
XXY 72 20 4 4 Rape 67 18 13 2 Phenylketonury 68 18 8 6 HIV Infection of the fetus
62 17 11 10
Rubella of the fetus
57 26 12 5
Hypercholesterolemia
56 30 8 6
Neurofibrimatosis 60 24 9 7 Predisposition to mental illness
51 33 12 4
Cleft lip and palate: girl/boy
52/48 28/26 12/15 8/11
Predisposition to Alcoholism
29 43 19 8
Severe obesity 31 25 26 17 Predisposition to Alzheimer
27 40 22 11
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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Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1, 1997 page 67, Table 2
Characteristic Nondirective Counseling (East-Germany
Nondirective Counseling (West-Germany
Positive Counseling (East-Germany
Positive Counseling (West-Germany
Negative Counseling (East-Germany
Negative Counseling (West-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 schizophrenia/bipolar disorder
50 56 43 41 7 3
Huntington Chorea
49 75 12 13 39 12
Hypercholesterolemia
49 66 23 28 28 6
Severe Obesity 49 56 49 40 2 4 Alzheimer 48 58 47 38 5 4 Predisposition to alcoholism
48 53 50 47 2 0
Klinefelter-Syndrome
46 40 44 58 10 2
Toxoplasmosis 45 61 23 19 32 20 Fetal HIV Infection
42 67 13 12 45 21
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 a female fetus
32 32 66 67 2 1
Cleft lip/palate in a male fetus
30 30 70 68 - 2
Severe open Spina bifida
22 55 - 2 78 43
Trisomy 13 13 17 - 1 83 57 Life of mother in danger
17 32 - 1 83 67
Child of undesired sex
14 13 86 87 - -
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 page 67, Table 2
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Pamela E. Cohen,' Dorothy C. Wertz, Irmgard Nippert, and Gerhard Wolff Journal of Genetic Counseling, Vol. 6, No. 1, 1997 page 67, Table 2
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 personalCarnevale A, et al (1998): Am J Med Genet Vol. 75:No. pp 426-432 p.428
Disease A B C D Hurler-Syndrome 18 13 69 79 Trisomy 13 5 13 82 88 Cleft lip-palate of female fetus
85 13 2 5
Severe open Spina bifida
8 10 82 80
Cystic Fibrosis 32 21 47 63 Anencephalus 3 8 89 90 Sickelcellanemia 47 18 35 36 Hypercholesterolemia
54 17 29 33
Predisposition to Schizophrenia
53 27 20 28
Huntington Chorea
43 21 36 52
Predisposition to Alzheimer
53 24 23 31
Predisposition to alcoholism
71 26 3 7
45,X 65 24 11 36 Down-Syndrome 24 16 60 67 XXY 60 24 16 30 Cleft lip-palate of male fetus
81 17 2 7
Neurofibromatosis
53 23 24 30
Achondroplasia 57 24 19 4 Unwanted sex 82 15 3 5 HIV Infection of the fetus
18 13 69 73
Toxoplasmosis 17 16 67 82 Rubella 18 14 68 82 Phenylketonury 59 16 25 45
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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
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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
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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
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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
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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, 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
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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.
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Attitudes toward prenatal testing and pregnancy termination among a diverse population of parents of children with intellectual disabilities
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.
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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.
04/08/2023Dr. Gregor Wolbring ETC talk,
Ottawa, 200438
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
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Self Identity SecurityKeyword Google Scholar Google
“Genetic risk” “Down Syndrome”
1,490 46,300
“Genetic probability” “Down Syndrome”
2 28
“Genetic likelihood” “Down Syndrome”
2 11
risk “Down Syndrome” 22,600 1,790,000
Probability “Down Syndrome”
5210 162,000
Likelihood “Down Syndrome”
5440 183,000
Probability/Incident of Dwarfism 0 0/0
“Risk of Dwarfism" achondroplasia"
0/0 1,110/660
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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, JDbVolume 26, Issue 5, October 2012, Pages 517–529
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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
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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
• 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
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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)
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Best Practice & Research Clinical Obstetrics & Gynaecology Eugene Pergament, MD, PhD, FACMGa, , , Deborah Pergament, MA, MLS, JDbVolume 26, Issue 5, October 2012, Pages 517–529
Scientific and Technological advancements
CNS-ASU research, education and outreach activities are supported by the National Science Foundation under cooperative agreement #0531194.
• 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)).
48
Ability expectation
49
50universalsports.nbcsports.com
• 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
The holy grail?
Synthetic Biology is A) the design and construction of new biological parts, devices, and systems, andB) the re-design of existing, natural biological systems for useful purposes.
• 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)
Synthetic Biology:
Artificial Womb
“Once you have a way in which you can improve our
children, no one can stop it. It would be stupid not to use it because someone
else will. Those parents who
enhance their children, then their
children are going to be the ones who
dominate the world.”—James Watson,
1962 Physiology and 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
“I think it's irresponsible not to try and direct evolution to produce a human being who will be an asset to the world.”“My view is that, despite the risks, we should give serious consideration to germ-line gene therapy. I only hope that the many biologists who share my opinion will stand tall in the debates to come and not be intimidated by the inevitable criticism ... If such work be called eugenics, then I am a eugenicist.”
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.
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.
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.
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)
CNS-ASU research, education and outreach activities are supported by the National Science Foundation under cooperative agreement #0531194.
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 Foundation under cooperative agreement #0531194.
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.
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 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
Converging Technologies for Improving Human Performance:
Nanotechnology, Biotechnology, Information Technology and Cognitive Science (NBIC)
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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).
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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)
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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
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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)
The role of disabled people
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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
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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)
Disability Studies Quarterly (2000-2011)
Review of Disability Studies (2004-2011)
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
Conclusion
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We have the concept of Military economic security food security, health security, environmental security, personal security, community security, political security,
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.)
David Werner