Aldred Scott Warthin’s Family ‘G’: The American Plot Against Cancer and Heredity (1895–1940)

Abstract

According to many, the genetic technology used in cancer is a promising test case of twenty-first century ‘genomic medicine’. However, it is important to realize that accounting for the genetic or hereditary factors in cancer medicine is not new. Since at least the eighteenth century, medical doctors and patients have tried to establish links between heredity and cancer. Following the excitement over the rediscovery of Gregor Mendel’s theory of hereditary transmission (1900), there was renewed interest in the question of a linkage between heredity and cancer. Researchers began to pay attention to the statistical use of family studies as a means to calculate Mendelian ratios of disease inheritance. In 1913, the Michigan University pathologist Aldred Scott Warthin (1866–1931) published his first study of a pedigree with a so-called inherited susceptibility for cancer. Family G’s susceptibility was associated with the risk of creating an ‘inferior stock’. Given the number of studies on heredity and disease and the vogue for eugenics at the beginning of the twentieth century, one would have expected strong support for Warthin’s study. Family G (one of the longest systematically studied cancer genealogies in the world and currently associated with Lynch syndrome) might have been accepted (if not for purely scientific reasons) as part of the eugenics gospel as an exemplary case of a degenerative stock. After all, Warthin was a rising star within the American medical establishment and had become part of John Kellogg’s eugenic priesthood in Michigan. Ultimately, none of these likely scenarios materialized. I will show in this chapter how the cancer idiom of heredity that was associated with shame, fatalism and stigmatization came to be regarded as counterproductive in the fight against cancer and was suppressed at the time by the powerful American Society for the Control of Cancer.

Earlier versions of this paper were presented under the same title at the Third International Workshop on Genetics, History and Public Understanding, European Society for Human Genetics Annual Conference, Barcelona, 30–31 May 2008; at the Izmir conference ‘Breeding the Nation: Eugenics, Culture and Science in the United States, 1900–1940’, 26–29 March 2012; and at the 24th International Congress of History of Science, Technology and Medicine, Manchester, 26 July 2013.

Epilogue

Following the early scientific paper trail of Family G does not do justice to the pain, hardship, sorrow and stigma the family members had to endure throughout the twentieth century right into genomic age in coping with their genealogical disease burden and their role as objects of research. The long-term process of collecting family history data has involved intensive and emotional discussions with researchers and relatives about health, disease, death and other related aspects of personal biographies. The major question for the expanding Family G continues to be: How might the ‘new’ knowledge that is generated by participating in medical research benefit them?

For more than a century, scientific ideas circulated within the family about the aetiology of their disease burden from a recessive familial susceptibility (1930s), a cancer-susceptible genotype with a possible underlying viral oncogene mechanism (1970s), hereditary non-polyposis colorectal cancer (HNPCC) or Lynch syndrome associated with a possible genetic mechanism (1980s) to germline mutations in DNA mismatch repair (MMR) genes (1990s).³⁵ The understanding of those ideas within Family G circles was always associated with the hope for a cure, but, at the same time, the knowledge that their close cooperation with scientists had not yielded major therapeutic benefits or a dramatic change in the family’s biography.

Following a frantic race, the headline news in 1994 that researchers had cloned the specific disease genes associated with Lynch syndrome and development of a genetic test was imminent was hailed as a victory within Family G. Predictive genetic medicine was believed to succeed where other medical approaches had failed, and the promise for an all-in-one cure for their genealogical misfortunes seemed more tangible than ever. President Bill Clinton exemplified this optimism when he announced the ‘first draft’ of the human genome in June 2000. Clinton claimed that for our children’s children, cancer would only be known as a constellation of stars.³⁶

However, in approximately 2001, the first results of the genetic tests were shared among Family G members, and their optimism quickly dwindled due to the development of disruptive family disputes over the issue of testing status. Those family members who had tested positive were confronted with complex preventive monitoring (e.g. colonoscopy) and surgical trajectories. They felt excluded by those family members who had tested negative and had no immediate medical obligation and the other way around. The professional writer Ami Mckay and Family G member, who lives in Canada, wrote and produced a most insightful radio documentary for CBC Radio ‘Daughter of Family G’ concerning the rather difficult decision to undergo genetic testing, what it meant to be tested and how she and other family members tried to cope with their test results. I would like to encourage all readers to learn more about this penetrating radio documentary. You will find a direct link to it here: http://www.mutantme.com/daughter-of-family-g/.³⁷