UNI320Y: Canadian Questions: Issues and Debates

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UNI320Y Canadian Questions Issues and Debates

• Week 5 Producing Healthy Citizens
• Professor Emily Gilbert
• http//individual.utoronto.ca/emilygilbert/

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Producing Healthy Citizens

• Eugenics in Early 20th Century Canada
• 21st Century Biological Citizenship
• Conclusions

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I Eugenics in Early 20th Century Canada

• Context of moral reform
• Increasing urbanization
• Increasing immigration
• Health concerns, eg contamination,
• venereal diseases
• Fear of rise of crime
• Concept of eugenicsintroduced in 1883 by Sir
  Francis Galton, founder of eugenics movement in
  England in 1904
• First International Eugenics Conference met in
  London in 1912, presided over by Leonard Darwin
• Attendees include Winston Churchill, Alexander
  Graham Bell, and Sir William Osler

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• Eugenics well born
• Idea that human characteristics inherited
• (Gregor Mendel)can be bred in, or outdominant
• and recessive phenotypes
• Positive eugenics
• Manipulating or enhancing the good genes of the
  population
• Baby bonuses sperm banks etc.
• Negative eugenics
• Discouraging or preventing reproduction of
  undesirables
• Sexual segregation marriage prohibition
• institutionalization sterilization etc
• US National Sickle-Cell Anemia
• Control Act (1972)

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Negative Eugenics in Canada

• Recurrent themes
• That mental retardation, mental illness,
  pauperism, criminality, prostitution, sexual
  perversion, etc. are hereditary
• That link between undesirables and criminality
• That reproductive rate higher among
  undesirables
• Progressive desire to solve social problems
  with science

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• Tommy Douglas
• Emily Murphy, Louise McKinney, and Nellie McClung
  (of the Famous Five)
• Alberta Farm Worker and Farm Women
• Dr. Helen MacMurchy

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• Sterilization bill proposed in Ont. In 1912 by
  Dr. John Godfrey (West York)
• Canadian Law Journal suggested wider application
• 1917 report on The Prevalence of Venereal
  Disease in Canada included a request that mental
  defectives be more closely supervised, become
  wards of the state, or be sterilized
• But little government or popular support for
  funding programs
• Eugenics laws passed in Alberta (1928) and
  British Columbia (1933)

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• ALBERTA Sexual Sterilization Act (1928-72
  revised 1937, 1942)
• Eugenics board set up, comprised of psychiatrist,
  judge and social worker
• Aim to eliminate the risk of multiplication of
  the evil of transmission of the disability to
  progeny or the risk of mental injury either to
  the individual or to his or her progeny
• 4,725 cases approved for sterilization, of which
  2,822 actually carried out

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• 1996 Alberta court awards about 750,000 (of
  2.5million sought) to Leilani Muir
• wrongfully sterilized in 1959 (age 14) at the Red
  Deer Provincial Training School for Mental
  Defectives
• The Alberta government subsequently settled out
  of court
• 60 million to 600 dependent adults in June, 1998
• 80 million to 250 independent adults in Nov 1999
  (about 325,000 each)
• Total costs about more than 150 million

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• BRITISH COLUMBIA Sexual Sterilization Act
  (1933-1979)
• Narrower parameters regarding sterilization
  fewer cases of sterilization
• Supreme Court of Canada decision in E. (Mrs.) vs.
  Eve (1986) Justice Gérard La Forest
  "Sterilization should never be authorized for
  non-therapeutic purposes under the parens patriae
  jurisdiction. In the absence of the affected
  person's consent, it can never be safely
  determined that it is for the benefit of that
  person. The grave intrusion on a person's rights
  and the ensuing physical damage outweigh the
  highly questionable advantages that can result
  from it. The court, therefore, lacks jurisdiction
  in such a case."
• Guiding Principles
• 1. Men and women with developmental disabilities
  have the right to choose or refuse sterilization.
  2. Non-therapeutic sterilization without the
  persons consent is a violation of a persons
  rights. 3. People with developmental
  disabilities have the right to choose whether to
  have children

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• 1997 mother had her son (21 years) castrated to
  prevent aggressive behaviour and prevent
  reproduction May 2002 mother being sued by BC
  government
• Dec 2000 14 elderly women who were mental health
  patients (at Riverview Hospital) launch lawsuit
  against the provincial government, represented by
  Thomas Berger claims dismissed in July 2003, but
  overturned by Court of Appeal Dec 2005 receive
  450,000 settlement

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II 21st Century Biological Citizenship

• Rapid scientific advances in genetic research
• Human Genome Project
• to map the three billion base pairs in the genome
  with ambition to understand function and
  interaction of genesdisease, gene-environment
  interactions, variations in immune responses
• Launched in 1990, and creation of international
  Human Genome Oganization (HUGO)
• 3 billion (US) investment for expected 15 year
  project
• Private consortium, Celera, launched 1998 with
  300 million (US), led by Craig Venter
• Canadian Genome Analysis and Technology Program
  (funded from 1992)

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• June 2000 announcement that rough draft complete
• April 2003 essentially complete genome
• May 2006 sequence of last chromosome
  published

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• Human Genome Diversity Project
• Started in 1991 by Luigi Luca Cavalli-Sforza at
  Stanford University
• To secure genes from representative populations
  around the worldto understand traits of racial
  groups
• Opposition, eg Rural Advancement Foundation
  International, eg IPR, racism, exclusion,
  biological terrorism

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• International HapMap Project
• To discover patterns of human genetic variation
• Started 2002
• Consortium of public and private groups in
  Canada, China, Japan, Nigeria, UK, US

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• With the success of the HGP, we have overcome
  the psychological barrier of cracking natures
  code and now face the more daunting
  responsibility of having power over the genetic
  destiny of our species (Scherer 18)
• Understanding how our minds work
• Understanding nature over nurture
• Ability to alter genetic constitution

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• But concerns regarding
• Links made between genes and disease
• Too much emphasis on genes
• Small number of diseases genetic
• Social stigmatization
• Pace of knowledgeimpact on treatment, eg BRCA1
  and BRCA2
• Who controls diagnosis and treatment, eg Japan
  Tobacco and Genesys and Corixa contracts
• Who has access to diagnosis and treatment
• Who has access to genetic information
• Implications for understanding diversity

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• Ethical quagmire pre-natal genetic testing
• Rights discourse and genetic normalcy
• A right to be born with a normal, adequate,
  hereditary endowment (OTA)?
• The right to ensure that each individual has
  at least a modicum of normal genes (HGP)?
• A right to decide who has right to live?

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• Issues around genetic testing and autonomous
  decision-making
• There is no need for a state-inspired and, by
  implication, coercive eugenics programme, if
  voluntary parental uptake and utilization of
  prenatal diagnosis, with selective abortion of
  fetuses found to be defective, will, for
  practical purposes, achieve the same result
  (from Caulfield and Robertson 73)
• How can people make autonomous decisions in light
  of
• Commercial interests
• Health care reform and cost efficiencies
• Medical-legal issues (costs, access)

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III Conclusions

• Genetics and the new normal?
• Within a democratic notion of citizenship, each
  individual is assumed to possess the
  characteristics of self-reliance, efficiency and
  competitiveness (Taylor and Mykitiuk 66)
• But what about those who dont meet these
  criteria of normalcy?
• Disease and disability seen as deviations from
  the normbut the norm needs to be understood as a
  social construction

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• Normalcy brings with it possibility of social
  control
• Normativity genetic testing
• Aspirations to excellence sperm banks, cloning
• A new form of biological citizenship? Rights,
  responsibilities and belonging based on genetic,
  biological information? Full citizenship
  characterized in terms of a healthy body, a
  healthy body politic?