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Inheriting Illness: genes, families, and the patient role

Inheriting Illness: genes, families, and the patient role. HI269 Week 9. Health, disease and responsibility. Let’s start with a poll: Who in this room thinks that a disease carrier should be placed under legal constraints related to his or her disease?

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Inheriting Illness: genes, families, and the patient role

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  1. Inheriting Illness: genes, families, and the patient role HI269 Week 9

  2. Health, disease and responsibility Let’s start with a poll: • Who in this room thinks that a disease carrier should be placed under legal constraints related to his or her disease? • Who thinks that governments should not have the power to constrain individuals due to their disease status?

  3. The Theory: Germs, Responsibility and the ‘Gospel of Hygiene’ S.D. Ehrhart, Puck, July 10, 1900

  4. ‘Gospel of Hygiene’:Heresies and heretics, and ‘harm’ ‘Typhoid Mary’, New York American, June 20, 1909

  5. Timeline:1869- Mary Mallon born, Country Tyrone, Ireland1883- Mallon emigrates to the United States1900- 1906 Mallon works as a cook in New York City. At her places of employment (private homes), Mallon unknowingly infects two dozen people with typhoid.1901- Manhattan. Member's of Mallon's employer's family and her coworkers develop fevers and diarrhea. One laundress dies.1906- Long Island. Within two weeks of hiring Mallon as a cook, fourteen of twenty family members are ill with typhoid. Mallon is eventually identified by George Soper as a healthy carrier.1908-1911 Mallon is quarantined on North Brother Island at Riverside Hospital. She is released after considerable media attention and after she gives her promise not to work in the food industry. 1915- Mallon returns to working as a cook. Using the pseudonym "Mary Brown" she is hired at the Sloan Maternity Hospital in New York. Twenty-five people are infected, two die. Mallon is returned to quarantine on North Brother Island.1915-1938 Mallon remains in quarantine for the rest of her life. She has her own cottage, makes her own meals, is occasionally interviewed by reporters and works as a lab assistant for a time.1938, November 11th: Mallon dies of pneumonia. An autopsy reveals live typhoid bacteria in her bladder.

  6. (Popular) Science speaks: “The great trouble with Typhoid Mary has been her perversity, exceeding even that which obtains in her most temperamental of callings. She has never conceded herself a menace; she would not wash and disinfect her hands as required; she will not change her occupation for one in which she will not endanger the lives of others; under an assumed name she had competed with the Wandering Jew in scattering destruction in her path.” Scientific American, 1915

  7. The ‘carrier’ speaks: “I have in fact been a peep show for everybody; even the internes had to come and see me and ask about the facts already known to the whole wide world ... Dr. Parks has had me illustrated in Chicago I wonder how [he] would like to be insulted and put in a journal and call him or his wife typhoid William Parks” Mary Mallon

  8. The opposition speaks: • “There is one common characteristic of carriers, it never varies: they are always plain people in humble circumstances; those with more money and influence who could fight back are never pronounced dangerous.” The Starry Cross (anti-vivisection newspaper), 1937

  9. Medicalization • Concept emerges from historical, sociological, philosophical critiques of biomedicine in 1970s • Refers to the re-definition of behaviours, traits, attributes, self-perceptions AND biological phenomena into medical, pathological, and potentially treatable conditions, and the consequent expansion of medical authority to include new areas of everyday life • Examples include alcoholism, homosexuality, libidinousness, depression, obesity, shyness, poor concentration, hereditary disease risks…

  10. Medicalization and identity • Key question: what aspects of our identity can we choose, and what aspects are imposed on us? And… • Who has the power to impose identities on us, to redefine our bodies or social roles? And how did they acquire that power?

  11. SO: What does it mean to be ‘sick’? When and why do we define ourselves to be ‘patients’? What do we gain/lose by defining ourselves as patients, or by allowing others to do so?

  12. Diagnosis, prognosis, and risk in the genetic age: censoring the body? Compare and contrast the roles of new medical knowledge and technology in the cases of ‘Typhoid Mary’ and Finker’s ‘Patients without symptoms’. Is medicalization new? Are the implications of medicalization different for genetic than for bacteriological ‘carriers’?

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