UNI320Y: Canadian Questions: Issues and Debates

1. UNI320Y: Canadian Questions: Issues and Debates Week 5: Producing Healthy Citizens Professor Emily Gilbert http://individual.utoronto.ca/emilygilbert/

2. Producing Healthy Citizens • Eugenics in Early 20th Century Canada • 21st Century Biological Citizenship • Conclusions

3. 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 eugenics—introduced 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

4. Eugenics = “well born” • Idea that human characteristics inherited (Gregor Mendel)—can be bred in, or out—dominant 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)

5. 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

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

7. 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)

8. 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

9. 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

10. 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 person’s consent is a violation of a person’s rights. 3. People with developmental disabilities have the right to choose whether to have children

11. 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

12. 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 genes—disease, 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)

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

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

16. 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

17. “With the success of the HGP, we have overcome the psychological barrier of cracking nature’s 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

19. But concerns regarding: • Links made between genes and disease Too much emphasis on genes Small number of diseases genetic Social stigmatization • Pace of knowledge—impact 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

20. 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?

21. 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…)

22. 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 don’t meet these criteria of ‘normalcy’? • Disease and disability seen as deviations from the norm—but the norm needs to be understood as a social construction

23. 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?