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Eugenics a matter of the past?




Dr. Gregor Wolbring and Natalie Ball,
University of Calgary
Community Rehabilitation an...
Thank You to
The students that worked with me since 2008
Christopher Powell, Seyyed Ghaderi, Jaskern Jaswanda, Brigid Burk...
Setting the stage: The scope of eugenics
              History till 1960
         Contemporary 1960-today
                ...
Setting the stage: The scope of eugenics
The meaning of Eugenics

l   We greatly want a brief word to express the science of improving
    stock, which is by no me...
The continuum of eugenics

l   Euthenics: Measures to improve the environment in order to improve
    health, appearance, ...
Positive Eugenics
l   ‗Positive‘ eugenics: increasing the number of desired phenotypic and
    genotypic traits within the...
Negative Eugenics

l   Negative eugenics aims to prevent and eradicate ‗unwanted‘
    genotypic and phenotypic traits with...
The continuum of eugenics

l   Given Galton‘s understanding of eugenics , eugenic goals are not
    bound to the past, nor...
History
l   Society is at last coming to realize that although the feeble-minded
    need guidance and social control. they can, w...
l




    Alberta Medical Bulletin Vol 2, No 7No 1   12
Support of Eugenics- Timeline
                                    Frequency of Nobel Laureates Supporting
                ...
Support and Rejection of Eugenics
       Nobel Laureates Openly Supporting Eugenics (by
                   year of prize a...
―Society has no business to permit degenerates to reproduce their kind....
 Any group of farmers who permitted their best ...
History 1960-today




                 Dr. Gregor Wolbring ETC talk,
11/15/2012                                       16
...
―We have to take away from humans
                in the long run their reproductive
                autonomy as the only ...
l   Dr. Margaret Thompson order of Canada member and former
    president of the genetics society of Canada said as the
  ...
l     “

l     The US noble laureate Joshua Lederberg (and one time adviser
      to Cetus Corporation) said in 1970 in fr...
l   Helga Kuhse (Professor Monash university Melbourne
    Australia) "failing to offer the methods to avoid the birth of
...
l   Parents of a child with unwanted disability have their interests
    impinged upon by the efforts, time, emotional bur...
Table 4. -Beliefs About Genetic Counseling%

                                          Genetic
Statement                  ...
l     ―It is socially irresponsible knowingly to bring an infant with a serious
      genetic disorder into the world in a...
―Soon it will be a sin for parents to have a child which carries the heavy
       burden of genetic disease. We are enteri...
8)Tab 14a Wahrnehmung von Behinderungen
   %Zustimmung fuer Antwort
               A
Deutschland         57
Frankreich    ...
7)Tab 3 Fairness und Verantwortung bei der Familienplannung
   %Zustimmung fuer Antwort
             1     2    3
Deutschl...
A study from 1994-1996 asked geneticists from China in regards to 26 conditions
whether they would counsel positive, negat...
Characteristic     Nondirecti Nondirecti Positive    Positive Negative     Negative
                                     v...
Disease               A    B    C      D
              Hurler-Syndrome       18   13   69     79
              Trisomy 13 ...
l   Objective The aim of this research was to compare attitudes between
    women from different cultural and/or religious...
l   Results In general, there were positive attitudes toward PND among
    the three groups surveyed. The attitudes of Sau...
Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women in
Saudi Arabia and the UK Ayma...
l   Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women
    in Saudi Arabia and the...
l   Results Twenty-four studies were accepted. The weightedmean
    termination rate was 67% (range: 61%–93%) among seven
...
Data from the Paris birth defects registry (Khoshnood et al., 2008)
showed that, during the past 20 years, the proportion ...
l   Attitudes toward prenatal testing and pregnancy termination among
    a diverse population of parents of children with...
Attitudes toward prenatal testing and pregnancy termination among a diverse population of
parents of children with intelle...
l     Applied to pathology, the engineering know-how necessary to
      clone a man could wipe out more than fifty sexlink...
Self Identity Security
Keyword                            Google Scholar    Google

“Genetic risk” “Down                  ...
The International Society for Prenatal Diagnosis agreed that,
with appropriate genetic counselling, non-invasive prenatal
...
Peter Singer in his book Rethinking life and death made the
case that thalidomide lead to the broader acceptance of
aborti...
Medical versus social reason
   Sex selection poses significant threats to the
    well-being of children and siblings, t...
• I realised recently that I suffer from a genetic
  condition. Although I have not actually had my
  genome screened, all...
Medical versus social reason
   Ability selection poses significant threats to the
    well-being of children and sibling...
Best Practice & Research Clinical Obstetrics & Gynaecology Eugene
Pergament, MD, PhD, FACMGa, , , Deborah Pergament, MA, M...
Scientific and Technological advancements
• Un outil, une machine ce sont des organes, et des
    organes sont des outils ou des Machines
    (Canguilhem, 1952).
• ...
Ability expectation




                      48
49
50
universalsports.nbcsports.com
•   Artificial gut: Status: Developed successfully
•   Artificial Heart: Status: First fully implantable artificial heart
...
The holy grail?
Synthetic Biology is
 A) the design and construction of new
 biological parts, devices, and systems,
 and
 B) the re-desig...
Synthetic Biology:
•   Humans that photosynthesize
•   New biological pathways
•   Reversal of Aging
•   Disease Fighting
...
Artificial Womb
―I think it's irresponsible ―Once you have a way
                                  not to try and direct               in ...
•   and some ethicists talk about the obligation to enhance
    oneself beyond the species-typical


•   Harris, J. Enhanc...
Meaning of health
Health and Rehabilitation
•    So far, the very meaning of health and therefore treatment and rehabilitation
     is bench...
Transhumanized model of health

•   Health in this model is the concept of having obtained maximum (at
    any given time)...
..Transhumanized model Rehabilitation
• Rehabilitation is a treatment or treatments designed to facilitate
  the process o...
Transhumanized DALY:

 DALY is a health gap measure developed with the intent to
  give guidance for allocating medical h...
Transhumanized DALY:

 If we apply this notion to a transhumanized model of health
  that quote would say,
 ― individual...
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...
Ableism

•   Individuals, households, communities, groups, sectors, regions,
    countries and cultures cherish and promot...
Ableism
     Ableism is one of the most societal entrenched and
      accepted isms and one of the biggest enabler for ot...
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
  ...
Converging Technologies for Improving Human Performance:

Nanotechnology, Biotechnology, Information Technology and
      ...
The NBIC report used the term productivity over 60 times and
  the term efficiency 54 times and the term competitiveness
 ...
What drives enhancement development?
•   For many, enhancements promised by new and more
    powerful technologies will be...
What drives enhancement development?

•   , polls indicate that personal interest in or aversion to using
    Human enhanc...
   Conversation between Alex D and Paul Denton
   Paul Denton: If you want to even out the social order, you have to cha...
The role of disabled people
   In Germany April 1933 , the [Reich Association of the Blind] RBV
    published Kraemer‘s pamphlet Kritik der Eugenik: ...
Table 9. Hit counts for various keywords in three academic journals: Disability & Society,
Disability Studies Quarterly an...
Conclusion
We have the concept of
   Military
 economic   security
 food security,

 health security,

 environmental security,
...
We Need to add


• Self Identity Security,
• Cultural Identity Security,
• Biological Diversity Security,
• Ability Securi...
David Werner
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Eugenics a matter of the past gregor wolbring Slide 1 Eugenics a matter of the past gregor wolbring Slide 2 Eugenics a matter of the past gregor wolbring Slide 3 Eugenics a matter of the past gregor wolbring Slide 4 Eugenics a matter of the past gregor wolbring Slide 5 Eugenics a matter of the past gregor wolbring Slide 6 Eugenics a matter of the past gregor wolbring Slide 7 Eugenics a matter of the past gregor wolbring Slide 8 Eugenics a matter of the past gregor wolbring Slide 9 Eugenics a matter of the past gregor wolbring Slide 10 Eugenics a matter of the past gregor wolbring Slide 11 Eugenics a matter of the past gregor wolbring Slide 12 Eugenics a matter of the past gregor wolbring Slide 13 Eugenics a matter of the past gregor wolbring Slide 14 Eugenics a matter of the past gregor wolbring Slide 15 Eugenics a matter of the past gregor wolbring Slide 16 Eugenics a matter of the past gregor wolbring Slide 17 Eugenics a matter of the past gregor wolbring Slide 18 Eugenics a matter of the past gregor wolbring Slide 19 Eugenics a matter of the past gregor wolbring Slide 20 Eugenics a matter of the past gregor wolbring Slide 21 Eugenics a matter of the past gregor wolbring Slide 22 Eugenics a matter of the past gregor wolbring Slide 23 Eugenics a matter of the past gregor wolbring Slide 24 Eugenics a matter of the past gregor wolbring Slide 25 Eugenics a matter of the past gregor wolbring Slide 26 Eugenics a matter of the past gregor wolbring Slide 27 Eugenics a matter of the past gregor wolbring Slide 28 Eugenics a matter of the past gregor wolbring Slide 29 Eugenics a matter of the past gregor wolbring Slide 30 Eugenics a matter of the past gregor wolbring Slide 31 Eugenics a matter of the past gregor wolbring Slide 32 Eugenics a matter of the past gregor wolbring Slide 33 Eugenics a matter of the past gregor wolbring Slide 34 Eugenics a matter of the past gregor wolbring Slide 35 Eugenics a matter of the past gregor wolbring Slide 36 Eugenics a matter of the past gregor wolbring Slide 37 Eugenics a matter of the past gregor wolbring Slide 38 Eugenics a matter of the past gregor wolbring Slide 39 Eugenics a matter of the past gregor wolbring Slide 40 Eugenics a matter of the past gregor wolbring Slide 41 Eugenics a matter of the past gregor wolbring Slide 42 Eugenics a matter of the past gregor wolbring Slide 43 Eugenics a matter of the past gregor wolbring Slide 44 Eugenics a matter of the past gregor wolbring Slide 45 Eugenics a matter of the past gregor wolbring Slide 46 Eugenics a matter of the past gregor wolbring Slide 47 Eugenics a matter of the past gregor wolbring Slide 48 Eugenics a matter of the past gregor wolbring Slide 49 Eugenics a matter of the past gregor wolbring Slide 50 Eugenics a matter of the past gregor wolbring Slide 51 Eugenics a matter of the past gregor wolbring Slide 52 Eugenics a matter of the past gregor wolbring Slide 53 Eugenics a matter of the past gregor wolbring Slide 54 Eugenics a matter of the past gregor wolbring Slide 55 Eugenics a matter of the past gregor wolbring Slide 56 Eugenics a matter of the past gregor wolbring Slide 57 Eugenics a matter of the past gregor wolbring Slide 58 Eugenics a matter of the past gregor wolbring Slide 59 Eugenics a matter of the past gregor wolbring Slide 60 Eugenics a matter of the past gregor wolbring Slide 61 Eugenics a matter of the past gregor wolbring Slide 62 Eugenics a matter of the past gregor wolbring Slide 63 Eugenics a matter of the past gregor wolbring Slide 64 Eugenics a matter of the past gregor wolbring Slide 65 Eugenics a matter of the past gregor wolbring Slide 66 Eugenics a matter of the past gregor wolbring Slide 67 Eugenics a matter of the past gregor wolbring Slide 68 Eugenics a matter of the past gregor wolbring Slide 69 Eugenics a matter of the past gregor wolbring Slide 70 Eugenics a matter of the past gregor wolbring Slide 71 Eugenics a matter of the past gregor wolbring Slide 72 Eugenics a matter of the past gregor wolbring Slide 73 Eugenics a matter of the past gregor wolbring Slide 74 Eugenics a matter of the past gregor wolbring Slide 75 Eugenics a matter of the past gregor wolbring Slide 76 Eugenics a matter of the past gregor wolbring Slide 77 Eugenics a matter of the past gregor wolbring Slide 78 Eugenics a matter of the past gregor wolbring Slide 79 Eugenics a matter of the past gregor wolbring Slide 80 Eugenics a matter of the past gregor wolbring Slide 81 Eugenics a matter of the past gregor wolbring Slide 82
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Gregor Wolbring Presentation given at the Conference 'Sleepwalking into Eugenics', at MShed, Bristol, 10th November 2012

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Eugenics a matter of the past gregor wolbring

  1. 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. 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. 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. 4. Setting the stage: The scope of eugenics
  5. 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. 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. 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. 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. 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. 10. History
  11. 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. 12. l Alberta Medical Bulletin Vol 2, No 7No 1 12
  13. 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. 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. 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. 16. History 1960-today Dr. Gregor Wolbring ETC talk, 11/15/2012 16 Ottawa, 2004
  17. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 46. Scientific and Technological advancements
  47. 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. 48. Ability expectation 48
  49. 49. 49
  50. 50. 50 universalsports.nbcsports.com
  51. 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. 52. The holy grail?
  53. 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. 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. 55. Artificial Womb
  56. 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. 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. 58. Meaning of health
  59. 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. 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. 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. 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. 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. 64. The driver of eugenic practices
  65. 65. The cultural dynamic of Ability expectation (want) and Ableism (need)
  66. 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. 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. 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. 69. Ability expectation (want) and Ableism (need): Moving beyond the species-typical
  70. 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. 71. Converging Technologies for Improving Human Performance: Nanotechnology, Biotechnology, Information Technology and Cognitive Science (NBIC)
  72. 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. 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. 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. 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. 76. The role of disabled people
  77. 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. 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. 79. Conclusion
  80. 80. We have the concept of  Military  economic security  food security,  health security,  environmental security,  personal security,  community security,  political security, 80
  81. 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. 82. David Werner

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

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