In The Face Of Epilepsy

By the early 2000s, Sharp had amassed a vast archive of breed health, genetic, and pedigree information, and she had initiated a variety of services for researchers, breeders, and ordinary Aussie people. What would happen to her data if something happened to her? Also, she had been threatened with lawsuits more than once by breeders more worried about their kennels' winning reputations in show culture than about their dogs and their dogs' offspring across future generations. That the threatened suits were very unlikely to have succeeded would not shield her from the personal financial disaster that having to defend against them would bring. In my experience, her discretion and practice of confidentiality were (and are) exemplary,39 but that might not protect her from well-funded and ill-intentioned Incorrigibles. This matter strikes at the heart of pedigree analysis and database accessibility. Also, her networks had grown way beyond the kitchen-table publishing, personal test breeding, and breed club-committee dimensions of the early years, although the face-to-face (and computer screen-to-screen) quality of dog health activism remains striking.

It was time for another transformation, this time into an incorporated, nonprofit, dog health organization that would operate in cooperation with, but independent from, all the Aussie breed clubs. Sharp's old colleague and friend on the ASCA DNA committee, Pete Adolphson, approached her with a similar idea, and they decided to work together to bring the plan to fruition. With an MS in zoology, Adolphson had published on the effects of aquatic toxicology on population genetics. Sharp and Adolphson recruited another former member of the ASCA DNA committee, George Johnson, a long-term Aussie owner and occasional breeder with a PhD in botany from North Carolina State University, who had published on Australian shepherd genetics in the breed magazine Aussie Times. In 2001 the Australian Shepherd Health and Genetics Institute incorporated in the United States as a federal 501(c)(3) organization, and in July 2002 Sharp and her colleagues publicly announced their infant institute. With the donated labor of a talented professional Web designer and Aussie breeder in Arizona, Claire Gustafson, ASHGI went online as in January 2003. Sharp serves as president. Joining her and Johnson after Adolphson left the board of directors, Kylie Munyard—then a postdoctoral agricultural genetic analyst at Murdoch University and now an associate lecturer in molecular genetics at Curtin University of Technology, Australia, as well as a competitor with her Aussie in agility, obedience, and, more recently, herding—came on the board. With two other activists, Munyard established the Australian Shepherd Health Registry of Australasia, which, alas, had a short life even as it inspired a project for an international Aussie health database.

From the beginning, ASHGI entered into partnerships with canine genetic researchers on projects that have included epilepsy research, behavioral genetics, multiple drug resistance genes, cataracts, and others.40 Encouraging people to give samples, ASHGI explains the research, spreads the word, and helps researchers to connect meaningfully in their work with the dog world. With files augmented by those of Sharp's deceased friend Betty Nelson, with whom she had done the original CEA test crosses, ASHGI maintains an extraordinary archive of documents relevant to breed health and genetics. They have a breedwide cancer survey underway as well as plans to develop an international online searchable health database (the International Directory for Australian Shepherd Health, IDASH), drawn from existing open health registries and voluntary submissions from Aussie owners. IDASH will computerize Sharp's pedigree-analysis and make it available as a paid ASHGI service.41 Gestating the idea for IDASH for about a year already and then further prompted by

BEACON, the bearded collie health organization's Web site, in 2005 Sharp networked at the Canine Health Foundation conference with activists in other breeds, especially bearded collies, Bernese mountain dogs, and mal-amutes.42 Each ASHGI project has a hard-working committee coordinating with Sharp. About a dozen very active people make ASHGI work; 90 percent of them are women; 100 percent of them live deeply entwined with cherished individual dogs as well as with the breed. Their labor of love would fall apart without constant Internet-mediated communication and considerable technoscientific professional and self-taught expertise. In my terms, cyborgs are among ASHGI's companion species.

Networking, connecting care with knowledge, and collective commitment are what get my attention in ASHGI. No one could miss the volunteer expertise and labor at the heart of the practice of love of the breed. Three activities make this matter vivid: the "Ask an Expert" feature of the Web site, the Ten Steps to a Healthier Australian Shepherd program for breeders, and support of a broad range of action to address epilepsy in the breed.

Sharp had for years answered an avalanche of e-mail questions about Aussie health and genetics, but with ASHGI she organized a corps of committed volunteer experts with diverse experience in the breed. E-mail links appear on each subject-matter page as well as several other places on the Web site to connect people to the relevant volunteer. One of those volunteers who give their expertise for free is Kim Monti, formerly a research chemist with a career in animal health product research and now a business consultant. Long active in search-and-rescue work with her dogs, as well as conformation and obedience, Monti is an Aussie breeder whose Foxwood Kennel is in New Mexico.43 The driving force behind and chair of the Ten Steps program, Monti has also been active in the effort to reduce the incidence of epilepsy in the breed. Ten Steps grew from an intense discussion about breeder ethics in the EpiGENES confidential online chat group, whose international membership represents the sweep of health cultures throughout the breed.44 Participants drew up numerous drafts before settling on a list of ten ethical actions every breeder should take to cultivate a culture of openness about problems, mutual support, health screening, and targeted research. The tone and content are caught by these four pledges: "I support the open disclosure of all health issues that affect Australian Shepherds, utilizing publicly accessible canine health registries in the country of my residence whenever possible"; "I do not speak ill of any breeder or breeding program that has produced affected Australian Shepherds"; "I compassionately support and assist owners of affected dogs in gathering information on the genetic diseases that have stricken their dogs"; and "Before being bred, all of my dogs are DNA profiled with an accredited laboratory and the results made public, if such services are available within my country, or before my stock is exported to a country that has DNA profiling available."

Breeders take the Ten Step pledge on the honor system, of course. No mandatory regulatory structure supports these practices in the breed clubs or elsewhere, for better and for worse. The existence of such a clear set of principles can be a powerful educational tool and a potent instrument of peer pressure. The pledge is taken in the first-person singular—"I"— but the statement is the fruit of rich collective processes among people deeply affected by the issues who see themselves to be directly responsible for making positive change happen. In many senses, Ten Steps is an exemplary instance of bioethics in transnational canine technoculture. For example, the program is simultaneously a response to the geneticiza-tion of health and illness across species, with its market-based research, testing, and therapeutic regimes; a model for responsible individual and collective action; an example of social activism in women's communities; a window to the casting of political and scientific action in ethical idioms and instruments; a product of screen-to-screen as well as face-to-face networking in digital culture; an active shaping of the terms of operation of key emergent objects of digital culture, such as open databases; and a fascinating configuration of affective and epistemological engagement with kinds of dogs, individual dogs, and dog people.

Ten Steps emerged from an epilepsy-focused confidential chat group, EpiGENES. Why is epilepsy so important in current dog culture, including Australian shepherd worlds? Why did a chat group have to be confidential? Are purebred dogs really sick all the time, seizing at every opportunity? The answer to the last question for Australian shepherds remains "no"; Aussies are a generally healthy breed, with a mean life expectancy of over twelve years. But genetic disease incidence has increased in recent decades, and that is unnecessary and inexcusable.45 Nonetheless, are we really certain that so-called idiopathic epilepsy definitely is a genetic disease or complex of diseases? What is the incidence of epilepsy in Australian shepherds, and how has that changed over the last twenty years or so? What would it take to know the answer to these questions? Why can epilepsy so concentrate what is at stake in the kind of examined lives C. A. Sharp has worked so hard to promote and practice?

In the 1980s, epilepsy was hardly heard of among Aussies, but twenty-five years later it is one of the two most frequent diseases in the breed, and denying its heritability has become very difficult. Show lines are riddled with it, and at least two nonshow lines are affected.46 Epilepsy first cropped up in obvious family clusters in the offspring of Aussies exported to the United Kingdom in the early 1990s, and the British breeders reacted with silence, coercion, and threats to those who spoke up. U.S. breeders tended to regard the U.K. scene as of no interest to themselves, but when reports of the disorder in U.S. dogs became more and more frequent, many U.S. breeders proceeded to react the same way that U.K. breeders had. Easy to misrecognize, primary or idiopathic (heritable) epilepsy was still diagnosed in 2006 by excluding other causes. Seizures can be caused by many things; the cause of inherited epilepsy is not yet nailed down to a mapped gene or genes (much less to gene regulation or epigenetic patterning); epilepsy usually does not manifest until well into adulthood, making it hard to breed away from; and living with epilepsy is extremely difficult for the dogs, their companion people, and their breeders. All of this opens the doors wide to the full panoply of Incorrigible antics and the associated Ostrich Syndrome. As Sharp put it, "An example of the Ostrich Syndrome gone malignant can be found in my breed. . . . There are many Ostriches who have or have produced epileptic Aussies, but the testing doesn't get done, they won't cooperate with an on-going research project, and what 'really' happened is the dog hit its head/got into an ant poison/had sun stroke, and so on. Apparently these dogs hit their heads, eat poison, or overheat every three to four weeks."47 The stakes are high for developing a direct DNA-based screening test, the strongest forceps available in technoculture for pulling ostrich heads into the bracing air on such matters.

Readers of this chapter will have noticed that EpiGENES was a confidential chat group, a powerful clue to the stigmatizing nature of diseases suspected of being hereditary.48 The evidence for the stigma and the attack response of Incorrigibles is not hard to find. Sharp began a powerful article on epilepsy in the Australian Shepherd Journal in 2003 with a horrific seizure log for one young bitch who had to be euthanized in 1993, six months after her first grand mal seizure. The gutsy owner of this dog, Pat Culver, placed a memorial ad in the September/October 1994 issue of the Aussie Times, giving the registered name, the cause of death, and two generations of pedigree. Some breeders with closely related dogs exploded and attacked Culver; other people discussed the need for positive response. Along with Culver, another Aussie lover named Ann DeChant, who had produced two litters with epileptic pups (and has since cleared epilepsy from her breeding program), and Sharp tried to rally breed action, but Sharp told me in our interview in November 2005 that people were afraid, and attention died down.

The Incorrigibles attacked those who spoke up and continued to breed first-degree relatives of affected dogs without telling anyone anything. In addition, these people slowed down positive response to the dogs' and their people's suffering by refusing to give samples from affected dogs and their close relatives to the two then-existing research programs, even though those projects held all data confidential. By the time of Sharp's and my interview in 2005, however, things had turned around because of a resolute grassroots movement of Aussie activists, who also came under the umbrella of ASHGI. That grassroots movement is one of the reasons that by the spring of 2006, a DNA test specific to at least one Aussie version of epilepsy seemed likely. (The genetics of the disease is not the same for all breeds, and a single-gene inheritance for any form of epilepsy is a weak fact at this point.)

At the Aussie National Specialty Show in Bakersfield, California, in 2002, three Arizona women and Ann DeChant from Michigan, all of whom had produced dogs who developed epilepsy and were committed to doing something about it, began to hatch a multifaceted, long-range plan. The Arizona gang included Kristin Rush, who became the chairperson of the Australian Shepherd Genetic Epilepsy Network and Education Service (AussieGENES), which came into ASHGI's structure; Claire Gustafson, who was the Web site designer for ASHGI; and Kristina Churchill. Along with Gustafson, Rush, and Churchill, DeChant set up

EpiGENES in 2003, while Gustafson and Heidi Mobley designed an attention-getting ad campaign in the major Aussie breed journals, with the ads bearing the signatures of people who had produced epileptic dogs and who refused to stay quiet any longer. The idea for the fleshed-out organization of AussieGENES came from the chat group EpiGENES. Sharp looked on, cheered, and helped where she could, including writing "The Road to Hell" for the 2003 issue of the Australian Shepherd Journal that published the first ads. That article attracted notice, winning a 2003 Dog Writers Association of America Maxwell Award. Also, both of the major breed registries, the ASCA and the United States Australian Shepherd Association, underwrote part of the expenses for the ad campaigns. There was even a Parade of Veterans and Titleholders at the 2005 Aussie National Specialty Show, in which several of the people who submitted bios for their dogs included the information that near kin had epilepsy. Even one of the titleholding dogs proudly walking with its human was listed as suffering from epilepsy. Sharp reported that the crowd was amazed, shocked, and deeply moved, with many people approaching the owner of the affected dog to thank her for her honesty. The attack culture was definitely losing its ability to silence and intimidate.

The Incorrigibles met another formidable force in the pet owner Pam Douglas, her afflicted dog Toby, and the charitable foundation Douglas established to increase public awareness about canine epilepsy and to develop means to fight the disease.49 A lawyer who had practiced on the East Coast and then moved to California, Douglas had raised three children with her husband, and they found themselves wanting another family member after their human offspring had fledged. And so, after examining all the standard health tests for eyes and hips, they bought an Australian shepherd puppy. The puppy's sire was from a well-regarded "Hall of Fame" kennel with many winners in conformation and versatility competitions. Douglas and her husband did not want a show dog or an athlete; they wanted a pet. Their puppy, Toby, had a series of misdiag-nosed difficulties beginning at the age of ten months, culminating in a terrifying grand mal seizure at thirteen months. The process of diagnosis and subsequent efforts to control the disease have been emotionally and physically painful, for humans and dog alike, not to mention expensive for the Douglases. Toby has major difficulties and a troubled prognosis, but the good news is that at over four years of age, Toby has a good life in spite of very serious and only partly controlled epilepsy and debilitating effects from both seizures and medications. The best news is that he has hard-drive, focused human herders for family members, who are not about to be intimidated.

Assuming the best, a still naive Douglas contacted Toby's breeder and the breeder of Toby's sire after the youngster's epilepsy became clear and had what she described as a long series of conversations that went nowhere. The Australian Shepherd Journal article on Douglas's story reported that these well-known breeders with a beautiful Web site about quality dogs who had all the standard health clearances (a site that, as far as I can tell, has not been updated since April 2003 and received more than twenty thousand unique visitors between December 2002 and December 2006) did not respond to her pleas to contribute blood samples of their dogs who were closely related to Toby to the major dog genetic epilepsy research program at the University of Missouri.50 Douglas refused to let things go at that. She talked at length with Sharp, who lent an ear and sympathy while Douglas educated herself about the science of canine epilepsy and the realities of supporting dogs and dog people through the illness. Douglas then published a heart-catching full-color ad in both major Aussie breed journals in 2004, asking for owners of Toby's relatives to contribute DNA samples to the Canine Epilepsy Network. The ad was called "The Face of Epilepsy." The advertisements published by Toby's Foundation are radical in dogland. The classic first-person biographical semiotics, portraiture, material signifiers of family, narrative pathos, appeals to take action, enticements to modern selfhood through participation in scientific research, and registered genealogy (even if indicating genetic disease) ought to be effective in U.S. middle-class culture. I for one am caught and proud of it. I contribute to Toby's Foundation and wish my readers would, too. To notice how material-semiotic labor is done does not vitiate it ethically or politically but locates it culturally and historically, within which nonreductive judgment is possible.

No one came forward with information about any of Toby's siblings, but one call linked Toby to Shadow, an Aussie puppy who had been

The Face of Epilepsy

Kutabay '$ Blue Chip Toby

ASCA AN 128035 • AKC #DL9082820I Sire: Moonlight's Short Circuit Dam: Hartke of Kuiabay

ASCA AN 128035 • AKC #DL9082820I Sire: Moonlight's Short Circuit Dam: Hartke of Kuiabay

"At 12 weeks old 1 caught my first ball. At 7 months old 1 went swimming for the first time. On February 17, 2003,I celebrated my first birthday. One month later I had my first grand mal seizure

Epilepsy threatens the future of our breed. Please give blood.

Toby lias been diagnosed with Idiopathic (Primary) Epilepsy. If yon arc related to Toby or any other affeetcd dog. please help by donating a DNA sample to the University of Missouri for research that can lead to a genetic screening test for Aussies to help put an end to this killer disease.

For more information contact Liz Hansen, Research Coordinator, by email at hanseni® or by phone at 573-884-3712 or visit www.canine-epilepsy.nel,

!-:>: more information about Toby call 949-455-7842 or email [email protected].

"The Face of Epilepsy," Australian Shepherd Journal (May/June 2004). Courtesy of Toby's Foundation and Pam Douglas.

whelped in November 2000 from the kennel of Toby's sire and who had such bad seizures that he had to be euthanized at eleven months of age. Shadow's humans helped craft a memorial ad for their dog too, asking for cooperation with research by giving blood samples from affected dogs and their close relatives. Including as many of these kin in the samples as possible is crucial for mapping genes of interest. The ad campaign has been very public and very effective. Pet owners, or at least Pam Douglas and her growing networks, have made their power felt in the breeders' purebred scene, where the mere pet buyer can feel decidedly secondary.

One of the labs looking for the gene or genes responsible for heritable epilepsy in Aussies, VetGen, dropped out in 2003,51 while Gary Johnson's lab in the Canine Epilepsy Network at the University of Missouri continued its research. AussieGENES, the DHNN, Toby's Foundation, and ASHGI have made sample submissions to the researchers a high priority. In 2003, the year of Toby's birth, the Canine Epilepsy Network had only ninety-nine samples from Aussies, with sixteen affected dogs. By 2006, they had over a thousand samples, more than for any other breed, including two extended multigenerational families. The patterns began to indicate that an autosomal recessive allele at only one locus might be the main culprit for this form of epilepsy. In early 2006, gene identification seemed near, and fund-raising was under way in Aussie land to obtain seventy thousand dollars to help support that final push. Many knots still remain to be tied in the technocultural assemblages needed to build and stabilize consequential facts, such as an Aussie epilepsy gene, but the activists in ASHGI and Toby's Foundation have invented some very promising cat's cradle patterns.

A DNA screening test is no panacea and certainly no cure for affected dogs, but in dog breeding, where identified mutations do prove strongly causal for a disorder, a reliable screening test can identify carriers and indicate carrier-to-carrier crosses to be avoided. The key is the community's relation to the test and to its technocultural apparatus. The Ashkenazi Jewish community in New York City has virtually eliminated the birth of babies with Tay-Sachs disease by first supporting research and then using a gene test, even while affected children continue to be born to other communities around the world with very different relationships to the cultural apparatuses of research, medicine, and genetic citizenship.52

Not all stories about gene tests are so benign, in either human or dog worlds, but maybe this Aussie tale can have a happy ending.

My shaggy dog story about webs of action in the postgenomic age is about an old symbiosis—that among knowledge, love, and responsibility. Dog genetics is a social network as much as a biotechnical one. Neither microsatellite markers, nor ten-generation pedigrees, nor DNA-based gene tests fall from the sky; they are the fruit of historically located natural-cultural work. Breed standards, dog genomes, and canine populations are material-semiotic objects that shape lives across species in historically specific ways. This chapter has asked how heterogeneous sorts of expertise and caring are required to craft and sustain scientific knowledge for the benefit of kinds of dogs, as well as individual pooches, within a particular, noninnocent, naturalcultural context. The story of C. A. Sharp navigates the linkages of lay and professional work as well as the linkages between knowledge and affect in technoculture. Genetic flows in dogs and humans have implications for meanings of species and race; origin stories remain potent in scientific culture; and molecular biotechnology can be mobilized to sustain ideas of diversity and conservation. Internet sociality shapes alliances and controversies in dog worlds, and popular and commercial practices infuse technical and professional worlds and vice versa.

None of this is breaking news in science studies, and none of it resolves the contradictions of biowealth, biocapital, and biopolitics, but all of it holds my attention as a scholar, a citizen, and a dog person. Sharp and her networks grapple with matters that shape human and nonhuman lives profoundly; they make a difference. Interested in the symbioses of companion species of both organic and inorganic kinds, I end with fusions. The passage of the leash law in Denver, Colorado, in the 1950s enclosed the commons of my childhood dog-human world. The proprietary regimes and DNA-testing surveillance mechanisms at the turn of the millennium map and enclose the commons of the genome and mandate new kinds of relations among breeders, researchers, dog owners and guardians, and dogs. Local and global crises of the depletion of cultural and biological diversity lead to novel kinds of enclosure of lands and bodies in zoos, museums, parks, and nations. Telling about a kind of dog also meant coming to terms with the complexities and consequences of histories of ranching and mining, the dispossession of Californios and Native Americans, and the modern efforts to constitute an economically, biologically, politically, and ethically viable human-animal agropastoralism out of the shards of that inheritance. No wonder that I am looking in the joined story of dogs and people for a vivid sense of a still possible common life and future from which we can continue to build.

Was this article helpful?

0 0

Post a comment