Littérature scientifique sur le sujet « New England Research Council on Marketing and Food Supply »

Créez une référence correcte selon les styles APA, MLA, Chicago, Harvard et plusieurs autres

Choisissez une source :

Consultez les listes thématiques d’articles de revues, de livres, de thèses, de rapports de conférences et d’autres sources académiques sur le sujet « New England Research Council on Marketing and Food Supply ».

À côté de chaque source dans la liste de références il y a un bouton « Ajouter à la bibliographie ». Cliquez sur ce bouton, et nous générerons automatiquement la référence bibliographique pour la source choisie selon votre style de citation préféré : APA, MLA, Harvard, Vancouver, Chicago, etc.

Vous pouvez aussi télécharger le texte intégral de la publication scolaire au format pdf et consulter son résumé en ligne lorsque ces informations sont inclues dans les métadonnées.

Articles de revues sur le sujet "New England Research Council on Marketing and Food Supply"

1

Pashchenko, O. V., О. В. Zharikova et O. V. Faychuk. « Improving the competitiveness of dairy products of Ukrainian producers in accordance with European standards ». Bioeconomics and Agrarian Business 11, no 1 (29 mai 2020) : 76–87. http://dx.doi.org/10.31548/bioeconomy2020.01.076.

Texte intégral
Résumé :
These scientists point out that the market situation in Ukraine is favorable for the dairy industry functioning and the country has the appropriate prerequisites for its development: favorable climate, large areas of agricultural land, soil fertility, historical experience in farming, qualified staff and significant dairy market capacity. However, the authors reveal the presence of significant problems in the development of Ukrainian dairy subcomplex enterprises which requires further research in the industry development in the current conditions. The aim of the paper is to analyze and assess the main factors of raw milk competitiveness in accordance with the European quality requirements on the dairy complex of Ukraine, as well as analyze the problems of its development and ways to solve them. Currently, dairy enterprises production in Ukraine meet the high quality standards of the EU only partially. Therefore, the main task for Ukrainian producers is to ensure the high quality of both raw milk and the processed products. In addition, antibiotics and palm oil, pesticides, plant substitutes, milk substitution with water, etc. must be excluded from dairy products. According to the statistics, the total consumption fund in Ukraine, including exports and imports, is 9.33 million tons of milk. If we divide this figure by 42 million people of Ukraine, we get 221 kg of milk per capita. But if we divide the real figures - 6.68 million tons - by the real figure for the Ukrainian population - 36 million people - we will see that the consumption level is much lower - 185 kg per capita. Milk production decreased by almost 3.6% in Ukraine during the year. This drop was the most noticeable in cream and butter production, so it is not surprising that this niche was quickly filled by the importers. But what impedes Ukrainian milk industry development in the domestic market and its entering the foreign market? The only reason is low level of milk production. In Ukraine, the volumes in 2019 fell below 10 million tons for the first time. These data are confirmed by the recently published "Forecast of milk production in Ukraine by 2030: methods and calculations" submitted by Olha Kozak, a researcher at the Department of Economics of Agricultural Production and International Integration of the National Research Center "Institute of Agrarian Economics". According to the expert, the internal shortage of the product in 2019 was indicated primarily by the growth of the purchase price for raw milk, which for the last three months of 2019 was almost in line with the world prices or 10-15% higher than in the previous year. In October 2019, the price reached the maximum in hryvnia for the period of Ukraine's independence. Some experts in this field claim that our milk is more expensive than in Belgium, and this is nonsense. The experts predict a record decline in raw materials for 2020. In 2020, these processes will only intensify, causing structural changes in all components of the dairy food system. The situation will also be complicated by the abolition of the Second Grade milk since January 1, 2020, which is provided by the new DSTU "3662: 2018" Raw cow's milk. Specifications". This implies that processing companies will not receive about 1 million tons of second-grade milk. Dairy food producers are embarrassed as they can not compete with the UE plants in terms of prices. Recently, which was attended by Vadym Chagarovsky, the Chairman of the Board of Directors of the Dairy Enterprises Union spoke at the Forum Dairy Business 2019 held in Kyiv. The expert claimed that it is necessary to work out a special development strategy for the period until 2025 in order to save the industry. The document will provide for a change in marketing strategies and, in particular, the definition of target export markets. Currently, Ukraine has implemented a system of food safety and quality control focused on the ultimate result. That is, individual product samples are selected for analysis by the controller. In case of positive results, the good quality of products is confirmed and the whole batch is subject to sale [1]. However, this approach does not guarantee complete safety and absolute product quality. 19 million tons of milk were produced by Ukrainian enterprises and about 5 tons were produced by the population20 years ago. According to these indicators, we were among the top ten world milk producers and, despite the problems with its quality, milk was suitable for processing. Therefore, development of dairy farming in Ukraine requires, above all, operating with real numbers. This is the only way the government can see the real state of this sector. And, by the way, the biggest error is in the amount of milk supplied by the population. The identification of cattle kept in small private farms could settle this problem and provide tracking real numbers and exercising effective control. Thus, the main problems of the milk market in Ukraine are insufficient milk supply and, above all, its low competitiveness and quality. According to some experts, the competitiveness of milk depends on its quality by 80%. At present, raw milk producers are not responsible for the microbiological and hygienic indicators of the EU countries. Since 2004, the quality of milk supplied to processing plants in Ukraine is regulated by the requirements of DSTU 3662-97 "whole cow's milk". Procurement requirements. In 2007, this standard was changed and a additional Extra grade was introduced. In the EU, the main document which sets requirements for food quality and safety is the Regulation (EU) № 853/2004 of the European Parliament and of the Council of 29 April 2004 defining specific rules for the hygiene of foodstuffs. The growing demands on dairy products quality has been an important trend in milk production: in July 2018 DSTU 3662: 2015 "Raw cow's milk. Specifications" was adopted. According to the document, there are three types of milk on the market: "extra", "higher" and "first". However, it was decided afterwards to leave the "second" grade until early 2020 to give farmers time to modernize production [6]. Over the next two years, it will be approved for processing into animal feed, casein, etc. Milk price has not only to reimburse the costs of its production, but to stimulate the growth of its production and contribute to increasing the profitability of its production as well. In addition, raw milk prices include the costs of milk processing enterprises, which cannot increase the price for milk and dairy products due to low solvency of consumers. More than that, the price increase may lead to a reduction in consumption. Increasing the competitiveness of raw milk producers is an important direction in the development of dairy industry enterprises in Ukraine. To achieve this aim they need to develop a set of measures aimed at increasing the productivity of cows, gradual increasing the livestock, especially in agricultural enterprises, increasing milk production and improving its quality characteristics through highly efficient technologies on an innovative basis, taking into account world experience. For this purpose the following steps must be taken: to restore and reconstruct the existing large livestock farms and complexes; increase the efficiency of selection work; to improve the conditions of the animals farming, milking and raw milk cooling system; set up modern large dairy complexes with highly productive animals and a well-established system of raw milk quality assurance; to consolidate raw milk producers with milk processing enterprises which will contribute to pricing policy regulation; to provide effective state support for producers; to introduce resource saving technologies into production in order to reduce resource costs and improve milk quality; to create a new technical and technological base that will meet the modern requirements for milk production; to learn from the experience of other countries; to improve the quality of milk by combating counterfeiting. Thus, the сurrent problems of raw milk producers competitiveness increase are challenging and relevant, and government measures aimed to meet high standards of dairy products safety and quality are the rule for the world's leading producers.
Styles APA, Harvard, Vancouver, ISO, etc.
2

Brien, Donna Lee. « Why Foodies Thrive in the Country : Mapping the Influence and Significance of the Rural and Regional Chef ». M/C Journal 11, no 5 (8 septembre 2008). http://dx.doi.org/10.5204/mcj.83.

Texte intégral
Résumé :
Introduction The academic area known as food studies—incorporating elements from disciplines including anthropology, folklore, history, sociology, gastronomy, and cultural studies as well as a range of multi-disciplinary approaches—asserts that cooking and eating practices are less a matter of nutrition (maintaining life by absorbing nutrients from food) and more a personal or group expression of various social and/or cultural actions, values or positions. The French philosopher, Michel de Certeau agrees, arguing, moreover, that there is an urgency to name and unpick (what he identifies as) the “minor” practices, the “multifarious and silent reserve of procedures” of everyday life. Such practices are of crucial importance to all of us, as although seemingly ordinary, and even banal, they have the ability to “organise” our lives (48). Within such a context, the following aims to consider the influence and significance of an important (although largely unstudied) professional figure in rural and regional economic life: the country food preparer variously known as the local chef or cook. Such an approach is obviously framed by the concept of “cultural economy”. This term recognises the convergence, and interdependence, of the spheres of the cultural and the economic (see Scott 335, for an influential discussion on how “the cultural geography of space and the economic geography of production are intertwined”). Utilising this concept in relation to chefs and cooks seeks to highlight how the ways these figures organise (to use de Certeau’s term) the social and cultural lives of those in their communities are embedded in economic practices and also how, in turn, their economic contributions are dependent upon social and cultural practices. This initial mapping of the influence and significance of the rural and regional chef in one rural and regional area, therefore, although necessarily different in approach and content, continues the application of such converged conceptualisations of the cultural and economic as Teema Tairu’s discussion of the social, recreational and spiritual importance of food preparation and consumption by the unemployed in Finland, Guy Redden’s exploration of how supermarket products reflect shared values, and a series of analyses of the cultural significance of individual food products, such as Richard White’s study of vegemite. While Australians, both urban and rural, currently enjoy access to an internationally renowned food culture, it is remarkable to consider that it has only been during the years following the Second World War that these sophisticated and now much emulated ways of eating and cooking have developed. It is, indeed, only during the last half century that Australian eating habits have shifted from largely Anglo-Saxon influenced foods and meals that were prepared and eaten in the home, to the consumption of a wider range of more international and sophisticated foods and meals that are, increasingly, prepared by others and eaten outside the consumer’s residence. While a range of commonly cited influences has prompted this relatively recent revolution in culinary practice—including post-war migration, increasing levels of prosperity, widespread international travel, and the forces of globalisation—some of this change owes a debt to a series of influential individual figures. These tastemakers have included food writers and celebrity chefs; with early exponents including Margaret Fulton, Graham Kerr and Charmaine Solomon (see Brien). The findings of this study suggests that many restaurant chefs, and other cooks, have similarly played, and continue to take, a key role in the lives of not only the, necessarily, limited numbers of individuals who dine in a particular eatery or the other chefs and/or cooks trained in that establishment (Ruhlman, Reach), but also the communities in which they work on a much broader scale. Considering Chefs In his groundbreaking study, A History of Cooks and Cooking, Australian food historian Michael Symons proposes that those who prepare food are worthy of serious consideration because “if ‘we are what we eat’, cooks have not just made our meals, but have also made us. They have shaped our social networks, our technologies, arts and religions” (xi). Writing that cooks “deserve to have their stories told often and well,” and that, moreover, there is a “need to invent ways to think about them, and to revise our views about ourselves in their light” (xi), Symons’s is a clarion call to investigate the role and influence of cooks. Charles-Allen Baker-Clark has explicitly begun to address this lacunae in his Profiles from the Kitchen: What Great Cooks Have Taught Us About Ourselves and Our Food (2006), positing not only how these figures have shaped our relationships with food and eating, but also how these relationships impact on identities, culture and a range of social issues including those of social justice, spirituality and environmental sustainability. With the growing public interest in celebrities, it is perhaps not surprising that, while such research on chefs and/or cooks is still in its infancy, most of the existing detailed studies on individuals focus on famed international figures such as Marie-Antoine Carême (Bernier; Kelly), Escoffier (James; Rachleff; Sanger), and Alexis Soyer (Brandon; Morris; Ray). Despite an increasing number of tabloid “tell-all” surveys of contemporary celebrity chefs, which are largely based on mass media sources and which display little concern for historical or biographical accuracy (Bowyer; Hildred and Ewbank; Simpson; Smith), there have been to date only a handful of “serious” researched biographies of contemporary international chefs such as Julia Child, Alice Waters (Reardon; Riley), and Bernard Loiseux (Chelminski)—the last perhaps precipitated by an increased interest in this chef following his suicide after his restaurant lost one of its Michelin stars. Despite a handful of collective biographical studies of Australian chefs from the later-1980s on (Jenkins; O’Donnell and Knox; Brien), there are even fewer sustained biographical studies of Australian chefs or cooks (Clifford-Smith’s 2004 study of “the supermarket chef,” Bernard King, is a notable exception). Throughout such investigations, as well as in other popular food writing in magazines and cookbooks, there is some recognition that influential chefs and cooks have worked, and continue to work, outside such renowned urban culinary centres as Paris, London, New York, and Sydney. The Michelin starred restaurants of rural France, the so-called “gastropubs” of rural Britain and the advent of the “star-chef”-led country bed and breakfast establishment in Australia and New Zealand, together with the proliferation of farmer’s markets and a public desire to consume locally sourced, and ecologically sustainable, produce (Nabhan), has focused fresh attention on what could be called “the rural/regional chef”. However, despite the above, little attention has focused on the Australian non-urban chef/cook outside of the pages of a small number of key food writing magazines such as Australian Gourmet Traveller and Vogue Entertaining + Travel. Setting the Scene with an Australian Country Example: Armidale and Guyra In 2004, the Armidale-Dumaresq Council (of the New England region, New South Wales, Australia) adopted the slogan “Foodies thrive in Armidale” to market its main city for the next three years. With a population of some 20,000, Armidale’s main industry (in economic terms) is actually education and related services, but the latest Tourist Information Centre’s Dining Out in Armidale (c. 2006) brochure lists some 25 restaurants, 9 bistros and brasseries, 19 cafés and 5 fast food outlets featuring Australian, French, Italian, Mediterranean, Chinese, Thai, Indian and “international” cuisines. The local Yellow Pages telephone listings swell the estimation of the total number of food-providing businesses in the city to 60. Alongside the range of cuisines cited above, a large number of these eateries foreground the use of fresh, local foods with such phrases as “local and regional produce,” “fresh locally grown produce,” “the finest New England ingredients” and locally sourced “New England steaks, lamb and fresh seafood” repeatedly utilised in advertising and other promotional material. Some thirty kilometres to the north along the New England highway, the country town of Guyra, proclaimed a town in 1885, is the administrative and retail centre for a shire of some 2,200 people. Situated at 1,325 metres above sea level, the town is one of the highest in Australia with its main industries those of fine wool and lamb, beef cattle, potatoes and tomatoes. Until 1996, Guyra had been home to a large regional abattoir that employed some 400 staff at the height of its productivity, but rationalisation of the meat processing industry closed the facility, together with its associated pet food processor, causing a downturn in employment, local retail business, and real estate values. Since 2004, Guyra’s economy has, however, begun to recover after the town was identified by the Costa Group as the perfect site for glasshouse grown tomatoes. Perfect, due to its rare combination of cool summers (with an average of less than two days per year with temperatures over 30 degrees celsius), high winter light levels and proximity to transport routes. The result: 3.3 million kilograms of truss, vine harvested, hydroponic “Top of the Range” tomatoes currently produced per annum, all year round, in Guyra’s 5-hectare glasshouse: Australia’s largest, opened in December 2005. What residents (of whom I am one) call the “tomato-led recovery” has generated some 60 new local jobs directly related to the business, and significant flow on effects in terms of the demand for local services and retail business. This has led to substantial rates of renovation and building of new residential and retail properties, and a noticeably higher level of trade flowing into the town. Guyra’s main street retail sector is currently burgeoning and stories of its renewal have appeared in the national press. Unlike many similar sized inland towns, there are only a handful of empty shops (and most of these are in the process of being renovated), and new commercial premises have recently been constructed and opened for business. Although a small town, even in Australian country town terms, Guyra now has 10 restaurants, hotel bistros and cafés. A number of these feature local foods, with one pub’s bistro regularly featuring the trout that is farmed just kilometres away. Assessing the Contribution of Local Chefs and Cooks In mid-2007, a pilot survey to begin to explore the contribution of the regional chef in these two close, but quite distinct, rural and regional areas was sent to the chefs/cooks of the 70 food-serving businesses in Armidale and Guyra that I could identify. Taking into account the 6 returns that revealed a business had closed, moved or changed its name, the 42 replies received represented a response rate of 65.5per cent (or two thirds), representatively spread across the two towns. Answers indicated that the businesses comprised 18 restaurants, 13 cafés, 6 bistro/brasseries, 1 roadhouse, 1 takeaway/fast food and 3 bed and breakfast establishments. These businesses employed 394 staff, of whom 102 were chefs and/cooks, or 25.9 per cent of the total number of staff then employed by these establishments. In answer to a series of questions designed to ascertain the roles played by these chefs/cooks in their local communities, as well as more widely, I found a wide range of inputs. These chefs had, for instance, made a considerable contribution to their local economies in the area of fostering local jobs and a work culture: 40 (95 per cent) had worked with/for another local business including but not exclusively food businesses; 30 (71.4 per cent) had provided work experience opportunities for those aspiring to work in the culinary field; and 22 (more than half) had provided at least one apprenticeship position. A large number had brought outside expertise and knowledge with them to these local areas, with 29 (69 per cent) having worked in another food business outside Armidale or Guyra. In terms of community building and sustainability, 10 (or almost a quarter) had assisted or advised the local Council; 20 (or almost half) had worked with local school children in a food-related way; 28 (two thirds) had helped at least one charity or other local fundraising group. An extra 7 (bringing the cumulative total to 83.3 per cent) specifically mentioned that they had worked with/for the local gallery, museum and/or local history group. 23 (more than half) had been involved with and/or contributed to a local festival. The question of whether they had “contributed anything else important, helpful or interesting to the community” elicited the following responses: writing a food or wine column for the local paper (3 respondents), delivering TAFE teacher workshops (2 respondents), holding food demonstrations for Rotary and Lions Clubs and school fetes (5 respondents), informing the public about healthy food (3 respondents), educating the public about environmental issues (2 respondents) and working regularly with Meals on Wheels or a similar organisation (6 respondents, or 14.3 per cent). One respondent added his/her work as a volunteer driver for the local ambulance transport service, the only non-food related response to this question. Interestingly, in line with the activity of well-known celebrity chefs, in addition to the 3 chefs/cooks who had written a food or wine column for the local newspaper, 11 respondents (more than a quarter of the sample) had written or contributed to a cookbook or recipe collection. One of these chefs/cooks, moreover, reported that he/she produced a weblog that was “widely read”, and also contributed to international food-related weblogs and websites. In turn, the responses indicated that the (local) communities—including their governing bodies—also offer some support of these chefs and cooks. Many respondents reported they had been featured in, or interviewed and/or photographed for, a range of media. This media comprised the following: the local newspapers (22 respondents, 52.4 per cent), local radio stations (19 respondents, 45.2 per cent), regional television stations (11 respondents, 26.2 per cent) and local websites (8 respondents, 19 per cent). A number had also attracted other media exposure. This was in the local, regional area, especially through local Council publications (31 respondents, 75 per cent), as well as state-wide (2 respondents, 4.8 per cent) and nationally (6 respondents, 14.3 per cent). Two of these local chefs/cooks (or 4.8 per cent) had attracted international media coverage of their activities. It is clear from the above that, in the small area surveyed, rural and regional chefs/cooks make a considerable contribution to their local communities, with all the chefs/cooks who replied making some, and a number a major, contribution to those communities, well beyond the requirements of their paid positions in the field of food preparation and service. The responses tendered indicate that these chefs and cooks contributed regularly to local public events, institutions and charities (with a high rate of contribution to local festivals, school programs and local charitable activities), and were also making an input into public education programs, local cultural institutions, political and social debates of local importance, as well as the profitability of other local businesses. They were also actively supporting not only the future of the food industry as a whole, but also the viability of their local communities, by providing work experience opportunities and taking on local apprentices for training and mentorship. Much more than merely food providers, as a group, these chefs and cooks were, it appears, also operating as food historians, public intellectuals, teachers, activists and environmentalists. They were, moreover, operating as content producers for local media while, at the same time, acting as media producers and publishers. Conclusion The terms “chef” and “cook” can be diversely defined. All definitions, however, commonly involve a sense of professionalism in food preparation reflecting some specialist knowledge and skill in the culinary arts, as well as various levels of creativity, experience and responsibility. In terms of the specific duties that chefs and professional cooks undertake every day, almost all publications on the subject deal specifically with workplace related activities such as food and other supply ordering, staff management, menu planning and food preparation and serving. This is constant across culinary textbooks (see, for instance, Culinary Institute of America 2002) and more discursive narratives about the professional chef such as the bestselling autobiographical musings of Anthony Bourdain, and Michael Ruhlman’s journalistic/biographical investigations of US chefs (Soul; Reach). An alternative preliminary examination, and categorisation, of the roles these professionals play outside their kitchens reveals, however, a much wider range of community based activities and inputs than such texts suggest. It is without doubt that the chefs and cooks who responded to the survey discussed above have made, and are making, a considerable contribution to their local New England communities. It is also without doubt that these contributions are of considerable value, and valued by, those country communities. Further research will have to consider to what extent these contributions, and the significance and influence of these chefs and cooks in those communities are mirrored, or not, by other country (as well as urban) chefs and cooks, and their communities. Acknowledgements An earlier version of this paper was presented at the Engaging Histories: Australian Historical Association Regional Conference, at the University of New England, September 2007. I would like to thank the session’s participants for their insightful comments on that presentation. A sincere thank you, too, to the reviewers of this article, whose suggestions assisted my thinking on this piece. Research to complete this article was carried out whilst a Visiting Fellow with the Research School of Humanities, the Australian National University. References Armidale Tourist Information Centre. Dining Out in Armidale [brochure]. Armidale: Armidale-Dumaresq Council, c. 2006. Baker-Clark, C. A. Profiles from the Kitchen: What Great Cooks have Taught us about Ourselves and our Food. Lexington: UP of Kentucky, 2006. Bernier, G. Antoine Carême 1783-1833: La Sensualité Gourmande en Europe. Paris: Grasset, 1989. Bourdain, A. Kitchen Confidential: Adventures in the Culinary Underbelly. New York: Harper Perennial, 2001. Bowyer, A. Delia Smith: The Biography. London: André Deutsch, 1999. Brandon, R. The People’s Chef: Alexis Soyer, A Life in Seven Courses. Chichester: Wiley, 2005. Brien, D. L. “Australian Celebrity Chefs 1950-1980: A Preliminary Study.” Australian Folklore 21 (2006): 201–18. Chelminski, R. The Perfectionist: Life and Death In Haute Cuisine. New York: Gotham Books, 2005. Clifford-Smith, S. A Marvellous Party: The Life of Bernard King. Milson’s Point: Random House Australia, 2004. Culinary Institute of America. The Professional Chef. 7th ed. New York: Wiley, 2002. de Certeau, M. The Practice of Everyday Life. Berkeley: U of California P, 1988. Hildred, S., and T. Ewbank. Jamie Oliver: The Biography. London: Blake, 2001. Jenkins, S. 21 Great Chefs of Australia: The Coming of Age of Australian Cuisine. East Roseville: Simon and Schuster, 1991. Kelly, I. Cooking for Kings: The Life of Antoine Carême, The First Celebrity Chef. New York: Walker and Company, 2003. James, K. Escoffier: The King of Chefs. London and New York: Hambledon and London, 2002. Morris, H. Portrait of a Chef: The Life of Alexis Soyer, Sometime Chef to the Reform Club. Cambridge: Cambridge UP, 1938. Nabhan, G. P. Coming Home to Eat: The Pleasures and Politics of Local Foods. New York: W.W. Norton, 2002. O’Donnell, M., and T. Knox. Great Australian Chefs. Melbourne: Bookman Press, 1999. Rachleff, O. S. Escoffier: King of Chefs. New York: Broadway Play Pub., 1983. Ray, E. Alexis Soyer: Cook Extraordinary. Lewes: Southover, 1991. Reardon, J. M. F. K. Fisher, Julia Child, and Alice Waters: Celebrating the Pleasures of the Table. New York: Harmony Books, 1994. Redden, G. “Packaging the Gifts of Nation.” M/C: A Journal of Media and Culture 2.7 (1999) accessed 10 September 2008 http://www.uq.edu.au/mc/9910/gifts.php. Riley, N. Appetite For Life: The Biography of Julia Child. New York: Doubleday, 1977. Ruhlman, M. The Soul of a Chef. New York: Viking, 2001. Ruhlman, M. The Reach of a Chef. New York: Viking, 2006. Sanger, M. B. Escoffier: Master Chef. New York: Farrar Straus Giroux, 1976. Scott, A. J. “The Cultural Economy of Cities.” International Journal of Urban and Regional Research 212 (1997) 323–39. Simpson, N. Gordon Ramsay: The Biography. London: John Blake, 2006. Smith, G. Nigella Lawson: A Biography. London: Andre Deutsch, 2005. Symons, M. A History of Cooks and Cooking. Urbana and Chicago: U of Illinois P, 2004. Tairu, T. “Material Food, Spiritual Quest: When Pleasure Does Not Follow Purchase.” M/C: A Journal of Media and Culture 2.7 (1999) accessed 10 September 2008 http://www.uq.edu.au/mc/9910/pleasure.php. White, R. S. “Popular Culture as the Everyday: A Brief Cultural History of Vegemite.” Australian Popular Culture. Ed. I. Craven. Cambridge UP, 1994. 15–21.
Styles APA, Harvard, Vancouver, ISO, etc.
3

Wessell, Adele. « Cookbooks for Making History : As Sources for Historians and as Records of the Past ». M/C Journal 16, no 3 (23 août 2013). http://dx.doi.org/10.5204/mcj.717.

Texte intégral
Résumé :
Historians have often been compared with detectives; searching for clues as evidence of a mystery they are seeking to solve. I would prefer an association with food, making history like a trained cook who blends particular ingredients, some fresh, some traditional, using specific methods to create an object that is consumed. There are primary sources, fresh and raw ingredients that you often have to go to great lengths to procure, and secondary sources, prepared initially by someone else. The same recipe may yield different meals, the same meal may provoke different responses. On a continuum of approaches to history and food, there are those who approach both as a scientific endeavour and, at the other end of the spectrum, those who make history and food as art. Brought together, it is possible to see cookbooks as history in at least two important ways; they give meaning to the past by representing culinary heritage and they are in themselves sources of history as documents and blueprints for experiences that can be interpreted to represent the past. Many people read cookbooks and histories with no intention of preparing the meal or becoming a historian. I do a little of both. I enjoy reading history and cookbooks for pleasure but, as a historian, I also read them interchangeably; histories to understand cookbooks and cookbooks to find out more about the past. History and the past are different of course, despite their use in the English language. It is not possible to relive the past, we can only interpret it through the traces that remain. Even if a reader had an exact recipe and an antique stove, vegetables grown from heritage seeds in similar conditions, eggs and grains from the same region and employed the techniques his or her grandparents used, they could not replicate their experience of a meal. Undertaking those activities though would give a reader a sense of that experience. Active examination of the past is possible through the processes of research and writing, but it will always be an interpretation and not a reproduction of the past itself. Nevertheless, like other histories, cookbooks can convey a sense of what was important in a culture, and what contemporaries might draw on that can resonate a cultural past and make the food palatable. The way people eat relates to how they apply ideas and influences to the material resources and knowledge they have. Used in this way, cookbooks provide a rich and valuable way to look at the past. Histories, like cookbooks, are written in the present, inspired and conditioned by contemporary issues and attitudes and values. Major shifts in interpretation or new directions in historical studies have more often arisen from changes in political or theoretical preoccupations, generated by contemporary social events, rather than the recovery of new information. Likewise, the introduction of new ingredients or methods rely on contemporary acceptance, as well as familiarity. How particular versions of history and new recipes promote both the past and present is the concern of this paper. My focus below will be on the nineteenth century, although a much larger study would reveal the circumstances that separated that period from the changes that followed. Until the late nineteenth century Australians largely relied on cookbooks that were brought with them from England and on their own private recipe collection, and that influenced to a large extent the sort of food that they ate, although of course they had to improvise by supplementing with local ingredients. In the first book of recipes that was published in Australia, The English and Australian Cookery Book that appeared in 1864, Edward Abbott evoked the ‘roast beef of old England Oh’ (Bannerman, Dictionary). The use of such a potent symbol of English identity in the nineteenth century may seem inevitable, and colonists who could afford them tended to use their English cookbooks and the ingredients for many years, even after Abbott’s publication. New ingredients, however, were often adapted to fit in with familiar culinary expectations in the new setting. Abbott often drew on native and exotic ingredients to produce very familiar dishes that used English methods and principles: things like kangaroo stuffed with beef suet, breadcrumbs, parsley, shallots, marjoram, thyme, nutmeg, pepper, salt, cayenne, and egg. It was not until the 1890s that a much larger body of Australian cookbooks became available, but by this time the food supply was widely held to be secure and abundant and the cultivation of exotic foods in Australia like wheat and sheep and cattle had established a long and familiar food supply for English colonists. Abbott’s cookbook provides a record of the culinary heritage settlers brought with them to Australia and the contemporary circumstances they had to adapt to. Mrs Beeton’s Cookery Book and Household Guide is an example of the popularity of British cookbooks in Australia. Beeton’s Kangaroo Tail Curry was included in the Australian cooking section of her household management (2860). In terms of structure it is important for historians as one of the first times, because Beeton started writing in the 1860s, that ingredients were clearly distinguished from the method. This actually still presents considerable problems for publishers. There is debate about whether that should necessarily be the case, because it takes up so much space on the page. Kangaroo Tail CurryIngredients:1 tail2 oz. Butter1 tablespoon of flour1 tablespoon of curry2 onions sliced1 sour apple cut into dice1 desert spoon of lemon juice3/4 pint of stocksaltMethod:Wash, blanch and dry the tail thoroughly and divide it at the joints. Fry the tail in hot butter, take it up, put it in the sliced onions, and fry them for 3 or 4 minutes without browning. Sprinkle in the flour and curry powder, and cook gently for at least 20 minutes, stirring frequently. Add the stock, apple, salt to taste, bring to the boil, stirring meanwhile, and replace the tail in the stew pan. Cover closely, and cook gently until tender, then add the lemon juice and more seasoning if necessary. Arrange the pieces of tail on a hot dish, strain the sauce over, and serve with boiled rice.Time: 2-3 hoursSufficient for 1 large dish. Although the steps are not clearly distinguished from each other the method is more systematic than earlier recipes. Within the one sentence, however, there are still two or three different sorts of tasks. The recipe also requires to some extent a degree of discretion, knowledge and experience of cooking. Beeton suggests adding things to taste, cooking something until it is tender, so experience or knowledge is necessary to fulfil the recipe. The meal also takes between two and three hours, which would be quite prohibitive for a lot of contemporary cooks. New recipes, like those produced in Delicious have recipes that you can do in ten minutes or half an hour. Historically, that is a new development that reveals a lot about contemporary conditions. By 1900, Australian interest in native food had pretty much dissolved from the record of cookbooks, although this would remain a feature of books for the English public who did not need to distinguish themselves from Indigenous people. Mrs Beeton’s Cookery Book and Household Guide gave a selection of Australian recipes but they were primarily for the British public rather than the assumption that they were being cooked in Australia: kangaroo tail soup was cooked in the same way as ox tail soup; roast wallaby was compared to hare. The ingredients were wallaby, veal, milk and butter; and parrot pie was said to be not unlike one made of pigeons. The novelty value of such ingredients may have been of interest, rather than their practical use. However, they are all prepared in ways that would make them fairly familiar to European tastes. Introducing something new with the same sorts of ingredients could therefore proliferate the spread of other foods. The means by which ingredients were introduced to different regions reflects cultural exchanges, historical processes and the local environment. The adaptation of recipes to incorporate local ingredients likewise provides information about local traditions and contemporary conditions. Starting to see those ingredients as a two-way movement between looking at what might have been familiar to people and what might have been something that they had to do make do with because of what was necessarily available to them at that time tells us about their past as well as the times they are living in. Differences in the level of practical cooking knowledge also have a vital role to play in cookbook literature. Colin Bannerman has suggested that the shortage of domestic labour in Australia an important factor in supporting the growth of the cookbook industry in the late nineteenth century. The poor quality of Australian cooking was also an occasional theme in the press during the same time. The message was generally the same: bad food affected Australians’ physical, domestic, social and moral well-being and impeded progress towards civilisation and higher culture. The idea was really that Australians had to learn how to cook. Colin Bannerman (Acquired Tastes 19) explains the rise of domestic science in Australia as a product of growing interest in Australian cultural development and the curse of bad cookery, which encouraged support for teaching girls and women how to cook. Domestic Economy was integrated into the Victorian and New South Wales curriculum by the end of the nineteenth century. Australian women have faced constant criticism of their cooking skills but the decision to teach cooking shouldn’t necessarily be used to support that judgement. Placed in a broader framework is possible to see the support for a modern, scientific approach to food preparation as part of both the elevation of science and systematic knowledge in society more generally, and a transnational movement to raise the status of women’s role in society. It would also be misleading not to consider the transnational context. Australia’s first cookery teachers were from Britain. The domestic-science movement there can be traced to the congress on domestic economy held in Manchester in 1878, at roughly the same time as the movement was gaining strength in Australia. By the 1890s domestic economy was widely taught in both British and Australian schools, without British women facing the same denigration of their cooking skills. Other comparisons with Britain also resulted from Australia’s colonial heritage. People often commented on the quality of the ingredients in Australia and said they were more widely available than they were in England but much poorer in quality. Cookbooks emerged as a way of teaching people. Among the first to teach cookery skills was Mina Rawson, author of The Antipodean Cookery Book and the Kitchen Companion first published in 1885. The book was a compilation of her own recipes and remedies, and it organised and simplified food preparation for the ordinary housewife. But the book also included directions and guidance on things like household tasks and how to cure diseases. Cookbooks therefore were not completely distinct from other aspects of everyday life. They offered much more than culinary advice on how to cook a particular meal and can similarly be used by historians to comment on more than food. Mrs Rawson also knew that people had to make do. She included a lot of bush foods that you still do not get in a lot of Australian meals, ingredients that people could substitute for the English ones they were used to like pig weed. By the end of the nineteenth century cooking had become a recognised classroom subject, providing early training in domestic service, and textbooks teaching Australians how to cook also flourished. Measurements became much more uniform, the layout of cookbooks became more standardised and the procedure was clearly spelled out. This allowed companies to be able to sell their foods because it also meant that you could duplicate the recipes and they could potentially taste the same. It made cookbooks easier to use. The audience for these cookbooks were mostly young women directed to cooking as a way of encouraging social harmony. Cooking was elevated in lots of ways at this stage as a social responsibility. Cookbooks can also be seen as a representation of domestic life, and historically this prescribed the activities of men and women as being distinct The dominance of women in cookbooks in the nineteenth and early twentieth centuries attested to the strength of that idea of separate spheres. The consequences of this though has been debated by historians: whether having that particular kind of market and the identification that women were making with each other also provided a forum for women’s voices and so became quite significant in women’s politics at a later date. Cookbooks have been a strategic marketing device for products and appliances. By the beginning of the twentieth century food companies began to print recipes on their packets and to release their own cookbooks to promote their products. Davis Gelatine produced its first free booklet in 1904 and other companies followed suit (1937). The largest gelatine factory was in New South Wales and according to Davis: ‘It bathed in sunshine and freshened with the light breezes of Botany all year round.’ These were the first lavishly illustrated Australian cookbooks. Such books were an attempt to promote new foods and also to sell local foods, many of which were overproduced – such as milk, and dried fruits – which provides insights into the supply chain. Cookbooks in some ways reflected the changing tastes of the public, their ideas, what they were doing and their own lifestyle. But they also helped to promote some of those sorts of changes too. Explaining the reason for cooking, Isabella Beeton put forward an historical account of the shift towards increasing enjoyment of it. She wrote: "In the past, only to live has been the greatest object of mankind, but by and by comforts are multiplied and accumulating riches create new wants. The object then is to not only live but to live economically, agreeably, tastefully and well. Accordingly the art of cookery commences and although the fruits of the earth, the fowls of the air, the beasts of the field and the fish of the sea are still the only food of mankind, yet these are so prepared, improved and dressed by skill and ingenuity that they are the means of immeasurably extending the boundaries of human enjoyment. Everything that is edible and passes under the hands of cooks is more or less changed and assumes new forms, hence the influence of that functionary is immense upon the happiness of the household" (1249). Beeton anticipates a growing trend not just towards cooking and eating but an interest in what sustains cooking as a form of recreation. The history of cookbook publishing provides a glimpse into some of those things. The points that I have raised provide a means for historians to use cookbooks. Cookbooks can be considered in terms of what was eaten, by whom and how: who prepared the food, so to whom the books were actually directed? Clever books like Isabella Beeton’s were directed at both domestic servants and at wives, which gave them quite a big market. There are also changes in the inclusion of themes. Economy and frugality becomes quite significant, as do organisation and management at different times. Changes in the extent of detail, changes in authorship, whether it is women, men, doctors, health professionals, home economists and so on all reflect contemporary concerns. Many books had particular purposes as well, used to fund raise or promote a particular perspective, relate food reform and civic life which gives them a political agenda. Promotional literature produced by food and kitchen equipment companies were a form of advertising and quite significant to the history of cookbook publishing in Australia. Other themes include the influence of cookery school and home economics movements; advice on etiquette and entertaining; the influence of immigration and travel; the creation of culinary stars and authors of which we are all fairly familiar. Further themes include changes in ingredients, changes in advice about health and domestic medicine, and the impact of changes in social consciousness. It is necessary to place those changes in a more general historical context, but for a long time cookbooks have been ignored as a source of information in their own right about the period in which they were published and the kinds of social and political changes that we can see coming through. More than this active process of cooking with the books as well becomes a way of imagining the past in quite different ways than historians are often used to. Cookbooks are not just sources for historians, they are histories in themselves. The privileging of written and visual texts in postcolonial studies has meant other senses, taste and smell, are frequently neglected; and yet the cooking from historical cookbooks can provide an embodied, sensorial image of the past. From nineteenth century cookbooks it is possible to see that British foods were central to the colonial identity project in Australia, but the fact that “British” culinary culture was locally produced, challenges the idea of an “authentic” British cuisine which the colonies tried to replicate. By the time Abbot was advocating rabbit curry as an Australian family meal, back “at home” in England, it was not authentic Indian food but the British invention of curry power that was being incorporated into English cuisine culture. More than cooks, cookbook authors told a narrative that forged connections and disconnections with the past. They reflected the contemporary period and resonated with the culinary heritage of their readers. Cookbooks make history in multiple ways; by producing change, as the raw materials for making history and as historical narratives. References Abbott, Edward. The English and Australian Cookery Book: Cookery for the Many, as well as the Upper Ten Thousand. London: Sampson Low, Son & Marston, 1864. Bannerman, Colin. Acquired Tastes: Celebrating Australia’s Culinary History. Canberra: National Library of Australia, 1998. Bannerman, Colin. "Abbott, Edward (1801–1869)." Australian Dictionary of Biography. National Centre of Biography, Australian National University. 21 May 2013. . Beeton, Isabella. Mrs Beeton’s Book of Household Management. New Ed. London and Melbourne: Ward, Lock and Co. Ltd., n.d. (c. 1909). Davis Gelatine. Davis Dainty Dishes. Rev ed. Sydney: Davis Gelatine Organization, 1937. Rawson, Lance Mrs. The Antipodean Cookery Book and Kitchen Companion. Melbourne: George Robertson & Co., 1897.
Styles APA, Harvard, Vancouver, ISO, etc.
4

Provençal, Johanne. « Ghosts in Machines and a Snapshot of Scholarly Journal Publishing in Canada ». M/C Journal 11, no 4 (1 juillet 2008). http://dx.doi.org/10.5204/mcj.45.

Texte intégral
Résumé :
The ideas put forth here do not fit perfectly or entirely into the genre and form of what has established itself as the scholarly journal article. What is put forth, instead, is a juxtaposition of lines of thinking about the scholarly and popular in publishing, past, present and future. As such it may indeed be quite appropriate to the occasion and the questions raised in the call for papers for this special issue of M/C Journal. The ideas put forth here are intended as pieces of an ever-changing puzzle of the making public of scholarship, which, I hope, may in some way fit with both the work of others in this special issue and in the discourse more broadly. The first line of thinking presented takes the form of an historical overview of publishing as context to consider a second line of thinking about the current status and future of publishing. The historical context serves as reminder (and cause for celebration) that publishing has not yet perished, contrary to continued doomsday sooth-saying that has come with each new medium since the advent of print. Instead, publishing has continued to transform and it is precisely the transformation of print, print culture and reading publics that are the focus of this article, in particular, in relation to the question of the boundaries between the scholarly and the popular. What follows is a juxtaposition that is part of an investigation in progress. Presented first, therefore, is a mapping of shifts in print culture from the time of Gutenberg to the twentieth century; second, is a contemporary snapshot of the editorial mandates of more than one hundred member journals of the Canadian Association of Learned Journals (CALJ). What such juxtaposition is able to reveal is open to interpretation, of course. And indeed, as I proceed in my investigation of publishing past, present and future, my interpretations are many. The juxtaposition raises a number of issues: of communities of readers and the cultures of reading publics; of privileged and marginalised texts (as well as their authors and their readers); of access and reach (whether in terms of what is quantifiable or in a much more subtle but equally important sense). In Canada, at present, these issues are also intertwined with changes to research funding policies and some attention is given at the end of this article to the Social Sciences and Humanities Research Council (SSHRC) of Canada and its recent/current shift in funding policy. Curiously, current shifts in funding policies, considered alongside an historical overview of publishing, would suggest that although publishing continues to transform, at the same time, as they say, plus ça change, plus c’est la même chose. Republics of Letters and Ghosts in Machines Republics of Letters that formed after the advent of the printing press can be conjured up as distant and almost mythical communities of elite literates, ghosts almost lost in a Gutenberg galaxy that today encompasses (and is embodied in) schools, bookshelves, and digital archives in many places across the globe. Conjuring up ghosts of histories past seems always to reveal ironies, and indeed some of the most interesting ironies of the Gutenberg galaxy involve McLuhanesque reversals or, if not full reversals, then in the least some notably sharp turns. There is a need to define some boundaries (and terms) in the framing of the tracing that follows. Given that the time frame in question spans more than five hundred years (from the advent of Gutenberg’s printing press in the fifteenth century to the turn of the 21st century), the tracing must necessarily be done in broad strokes. With regard to what is meant by the “making public of scholarship” in this paper, by “making public” I refer to accounts historians have given in their attempts to reconstruct a history of what was published either in the periodical press or in books. With regard to scholarship (and the making public of it), as with many things in the history of publishing (or any history), this means different things in different times and in different places. The changing meanings of what can be termed “scholarship” and where and how it historically has been made public are the cornerstones on which this article (and a history of the making public of scholarship) turn. The structure of this paper is loosely chronological and is limited to the print cultures and reading publics in France, Britain, and what would eventually be called the US and Canada, and what follows here is an overview of changes in how scholarly and popular texts and publics are variously defined over the course of history. The Construction of Reading Publics and Print Culture In any consideration of “print culture” and reading publics, historical or contemporary, there are two guiding principles that historians suggest should be kept in mind, and, though these may seem self-evident, they are worth stating explicitly (perhaps precisely because they seem self-evident). The first is a reminder from Adrian Johns that “the very identity of print itself has had to be made” (2 italics in original). Just as the identity of print cultures are made, similarly, a history of reading publics and their identities are made, by looking to and interpreting such variables as numbers and genres of titles published and circulated, dates and locations of collections, and information on readers’ experiences of texts. Elizabeth Eisenstein offers a reminder of the “widely varying circumstances” (92) of the print revolution and an explicit acknowledgement of such circumstances provides the second, seemingly self-evident guiding principle: that the construction of reading publics and print culture must not only be understood as constructed, but also that such constructions ought not be understood as uniform. The purpose of the reconstructions of print cultures and reading publics presented here, therefore, is not to arrive at final conclusions, but rather to identify patterns that prove useful in better understanding the current status (and possible future) of publishing. The Fifteenth and Sixteenth Centuries—Boom, then Busted by State and Church In search of what could be termed “scholarship” following the mid-fifteenth century boom of the early days of print, given the ecclesiastical and state censorship in Britain and France and the popularity of religious texts of the 15th and 16th centuries, arguably the closest to “scholarship” that we can come is through the influence of the Italian Renaissance and the revival and translation (into Latin, and to a far lesser extent, vernacular languages) of the classics and indeed the influence of the Italian Renaissance on the “print revolution” is widely recognised by historians. Historians also recognise, however, that it was not long until “the supply of unpublished texts dried up…[yet for authors] to sell the fruits of their intellect—was not yet common practice before the late 16th century” (Febvre and Martin 160). Although this reference is to the book trade in France, in Britain, and in the regions to become the US and Canada, reading of “pious texts” was similarly predominant in the early days of print. Yet, the humanist shift throughout the 16th century is evidenced by titles produced in Paris in the first century of print: in 1501, in a total of 88 works, 53 can be categorised as religious, with 25 categorised as Latin, Greek, or Humanist authors; as compared to titles produced in 1549, in a total of 332 titles, 56 can be categorised as religious with 204 categorised as Latin, Greek, or Humanist authors (Febvre and Martin 264). The Seventeenth Century—Changes in the Political and Print Landscape In the 17th century, printers discovered that their chances of profitability (and survival) could be improved by targeting and developing a popular readership through the periodical press (its very periodicity and relative low cost both contributed to its accessibility by popular publics) in Europe as well as in North America. It is worthwhile to note, however, that “to the end of the seventeenth century, both literacy and leisure were virtually confined to scholars and ‘gentlemen’” (Steinberg 119) particularly where books were concerned and although literacy rates were still low, through the “exceptionally literate villager” there formed “hearing publics” who would have printed texts read to them (Eisenstein 93). For the literate members of the public interested not only in improving their social positions through learning, but also with intellectual (or spiritual or existential) curiosity piqued by forbidden books, it is not surprising that Descartes “wrote in French to a ‘lay audience … open to new ideas’” (Jacob 41). The 17th century also saw the publication of the first scholarly journals. There is a tension that becomes evident in the seventeenth century that can be seen as a tension characteristic of print culture, past and present: on the one hand, the housing of scholarship in scholarly journals as a genre distinct from the genre of the popular periodicals can be interpreted as a continued pattern of (elitist) divide in publics (as seen earlier between the oral and the written word, between Latin and the vernacular, between classic texts and popular texts); while, on the other hand, some thinkers/scholars of the day had an interest in reaching a wider audience, as printers always had, which led to the construction and fragmentation of audiences (whether the printer’s market for his goods or the scholar’s marketplace of ideas). The Eighteenth Century—Republics of Letters Become Concrete and Visible The 18th century saw ever-increasing literacy rates, early copyright legislation (Statute of Anne in 1709), improved printing technology, and ironically (or perhaps on the contrary, quite predictably) severe censorship that in effect led to an increased demand for forbidden books and a vibrant and international underground book trade (Darnton and Roche 138). Alongside a growing book trade, “the pulpit was ultimately displaced by the periodical press” (Eisenstein 94), which had become an “established institution” (Steinberg 125). One history of the periodical press in France finds that the number of periodicals (to remain in publication for three or more years) available to the reading public in 1745 numbered 15, whereas in 1785 this increased to 82 (Censer 7). With regard to scholarly periodicals, another study shows that between 1790 and 1800 there were 640 scientific-technological periodicals being published in Europe (Kronick 1961). Across the Atlantic, earlier difficulties in cultivating intellectual life—such as haphazard transatlantic exchange and limited institutions for learning—began to give way to a “republic of letters” that was “visible and concrete” (Hall 417). The Nineteenth Century—A Second Boom and the Rise of the Periodical Press By the turn of the 19th century, visible and concrete republics of letters become evident on both sides of the Atlantic in the boom in book publishing and in the periodical press, scholarly and popular. State and church controls on printing/publishing had given way to the press as the “fourth estate” or a free press as powerful force. The legislation of public education brought increased literacy rates among members of successive generations. One study of literacy rates in Britain, for example, shows that in the period from 1840–1870 literacy rates increased by 35–70 per cent; then from 1870–1900, literacy increased by 78–261 per cent (Mitch 76). Further, with the growth and changes in universities, “history, languages and literature and, above all, the sciences, became an established part of higher education for the first time,” which translated into growing markets for book publishers (Feather 117). Similarly the periodical press reached ever-increasing and numerous reading publics: one estimate of the increase finds the publication of nine hundred journals in 1800 jumping to almost sixty thousand in 1901 (Brodman, cited in Kronick 127). Further, the important role of the periodical press in developing communities of readers was recognised by publishers, editors and authors of the time, something equally recognised by present-day historians describing the “generic mélange of the periodical … [that] particularly lent itself to the interpenetration of language and ideas…[and] the verbal and conceptual interconnectedness of science, politics, theology, and literature” (Dawson, Noakes and Topham 30). Scientists recognised popular periodicals as “important platforms for addressing a non-specialist but culturally powerful public … [they were seen as public] performances [that] fulfilled important functions in making the claims of science heard among the ruling élite” (Dawson et al. 11). By contrast, however, the scholarly journals of the time, while also increasing in number, were becoming increasingly specialised along the same disciplinary boundaries being established in the universities, fulfilling a very different function of forming scholarly and discipline-specific discourse communities through public (published) performances of a very different nature. The Twentieth Century—The Tension Between Niche Publics and Mass Publics The long-existing tension in print culture between the differentiation of reading publics on the one hand, and the reach to ever-expanding reading publics on the other, in the twentieth century becomes a tension between what have been termed “niche-marketing” and “mass marketing,” between niche publics and mass publics. What this meant for the making public of scholarship was that the divides between discipline-specific discourse communities (and their corresponding genres) became more firmly established and yet, within each discipline, there was further fragmentation and specialisation. The niche-mass tension also meant that although in earlier print culture, “the lines of demarcation between men of science, men of letters, and scientific popularizers were far from clear, and were constantly being renegotiated” (Dawson et al 28), with the increasing professionalisation of academic work (and careers), lines of demarcation became firmly drawn between scholarly and popular titles and authors, as well as readers, who were described as “men of science,” as “educated men,” or as “casual observers” (Klancher 90). The question remains, however, as one historian of science asks, “To whom did the reading public go in order to learn about the ultimate meaning of modern science, the professionals or the popularizers?” (Lightman 191). By whom and for whom, where and how scholarship has historically been made public, are questions worthy of consideration if contemporary scholars are to better understand the current status (and possible future) for the making public of scholarship. A Snapshot of Scholarly Journals in Canada and Current Changes in Funding Policies The here and now of scholarly journal publishing in Canada (a growing, but relatively modest scholarly journal community, compared to the number of scholarly journals published in Europe and the US) serves as an interesting microcosm through which to consider how scholarly journal publishing has evolved since the early days of print. What follows here is an overview of the membership of the Canadian Association of Learned Journals (CALJ), in particular: (1) their target readers as identifiable from their editorial mandates; (2) their print/online/open-access policies; and (3) their publishers (all information gathered from the CALJ website, http://www.calj-acrs.ca/). Analysis of the collected data for the 100 member journals of CALJ (English, French and bilingual journals) with available information on the CALJ website is presented in Table 1 (below). A few observations are noteworthy: (1) in terms of readers, although all 100 journals identify a scholarly audience as their target readership, more than 40% of the journal also identify practitioners, policy-makers, or general readers as members of their target audience; (2) more than 25% of the journals publish online as well as or instead of print editions; and (3) almost all journals are published either by a Canadian university or, in one case, a college (60%) or a scholarly or professional society (31%). Table 1: Target Readership, Publishing Model and Publishers, CALJ Members (N=100) Journals with identifiable scholarly target readership 100 Journals with other identifiable target readership: practitioner 35 Journals with other identifiable target readership: general readers 18 Journals with other identifiable target readership: policy-makers/government 10 Total journals with identifiable target readership other than scholarly 43 Journals publishing in print only 56 Journals publishing in print and online 24 Journals publishing in print, online and open access 16 Journals publishing online only and open access 4 Journals published through a Canadian university press, faculty or department 60 Journals published by a scholarly or professional society 31 Journals published by a research institute 5 Journals published by the private sector 4 In the context of the historical overview presented earlier, this data raises a number of questions. The number of journals with target audiences either within or beyond the academy raises issues akin to the situation in the early days of print, when published works were primarily in Latin, with only 22 per cent in vernacular languages (Febvre and Martin 256), thereby strongly limiting access and reach to diverse audiences until the 17th century when Latin declined as the international language (Febvre and Martin 275) and there is a parallel to scholarly journal publishing and their changing readership(s). Diversity in audiences gradually developed in the early days of print, as Febvre and Martin (263) show by comparing the number of churchmen and lawyers with library collections in Paris: from 1480–1500 one lawyer and 24 churchmen had library collections, compared to 1551–1600, when 71 lawyers and 21 churchmen had library collections. Although the distinctions between present-day target audiences of Canadian scholarly journals (shown in Table 1, above) and 16th-century churchmen or lawyers no doubt are considerable, again there is a parallel with regard to changes in reading audiences. Similarly, the 18th-century increase in literacy rates, education, and technological advances finds a parallel in contemporary questions of computer literacy and access to scholarship (see Willinsky, “How,” Access, “Altering,” and If Only). Print culture historians and historians of science, as noted above, recognise that historically, while scholarly periodicals have increasingly specialised and popular periodicals have served as “important platforms for addressing a non-specialist but culturally powerful public…[and] fulfill[ing] important functions in making the claims of science heard among the ruling élite” (Dawson 11), there is adrift in current policies changes (and in the CALJ data above) a blurring of boundaries that harkens back to earlier days of print culture. As Adrian John reminded us earlier, “the very identity of print itself has had to be made” (2, italics in original) and the same applies to identities or cultures of print and the members of that culture: namely, the readers, the audience. The identities of the readers of scholarship are being made and re-made, as editorial mandates extend the scope of journals beyond strict, academic disciplinary boundaries and as increasing numbers of journals publish online (and open access). In Canada, changes in scholarly journal funding by the Social Sciences and Humanities Research Council (SSHRC) of Canada (as well as changes in SSHRC funding for research more generally) place increasing focus on impact factors (an international trend) as well as increased attention on the public benefits and value of social sciences and humanities research and scholarship (see SSHRC 2004, 2005, 2006). There is much debate in the scholarly community in Canada about the implications and possibilities of the direction of the changing funding policies, not least among members of the scholarly journal community. As noted in the table above, most scholarly journal publishers in Canada are independently published, which brings advantages of autonomy but also the disadvantage of very limited budgets and there is a great deal of concern about the future of the journals, about their survival amidst the current changes. Although the future is uncertain, it is perhaps worthwhile to be reminded once again that contrary to doomsday sooth-saying that has come time and time again, publishing has not perished, but rather it has continued to transform. I am inclined against making normative statements about what the future of publishing should be, but, looking at the accounts historians have given of the past and looking at the current publishing community I have come to know in my work in publishing, I am confident that the resourcefulness and commitment of the publishing community shall prevail and, indeed, there appears to be a good deal of promise in the transformation of scholarly journals in the ways they reach their audiences and in what reaches those audiences. Perhaps, as is suggested by the Canadian Centre for Studies in Publishing (CCSP), the future is one of “inventing publishing.” References Canadian Association of Learned Journals. Member Database. 10 June 2008 ‹http://www.calj-acrs.ca/>. Canadian Centre for Studies in Publishing. 10 June 2008. ‹http://www.ccsp.sfu.ca/>. Censer, Jack. The French Press in the Age of Enlightenment. London: Routledge, 1994. Darnton, Robert, Estienne Roche. Revolution in Print: The Press in France, 1775–1800. Berkeley: U of California P, 1989. Dawson, Gowan, Richard Noakes, and Jonathan Topham. Introduction. Science in the Nineteenth-century Periodical: Reading the Magazine of Nature. Ed. Geoffrey Cantor, Gowan Dawson, Richard Noakes, and Jonathan Topham. Cambridge: Cambridge UP, 2004. 1–37. Eisenstein, Elizabeth. The Printing Revolution in Early Modern Europe. Cambridge: Cambridge UP, 1983 Feather, John. A History of British Publishing. New York: Routledge, 2006. Febvre, Lucien, and Henri-Jean Martin. The Coming of the Book: The Impact of Printing 1450–1800. London: N.L.B., 1979. Jacob, Margaret. Scientific Culture and the Making of the Industrial West. New York: Oxford UP, 1997. Johns, Adrian. The Nature of the Book: Print and Knowledge in the Making. Chicago: U of Chicago P, 1998. Hall, David, and Hugh Armory. The Colonial Book in the Atlantic World. Cambridge: Cambridge UP, 2000. Klancher, Jon. The Making of English Reading Audiences. Madison: U of Wisconsin P, 1987. Kronick, David. A History of Scientific and Technical Periodicals: The Origins and Development of the Scientific and Technological Press, 1665–1790. New York: Scarecrow Press, 1961. ---. "Devant le deluge" and Other Essays on Early Modern Scientific Communication. Lanham: Scarecrow Press, 2004. Lightman, Bernard. Victorian Science in Context. Chicago: U of Chicago P, 1997. Mitch, David. The Rise of Popular Literacy in Victorian England: The Influence of Private choice and Public Policy. Philadelphia: U of Pennsylvania P, 1991. Social Sciences and Humanities Research Council. Granting Council to Knowledge Council: Renewing the Social Sciences and Humanities in Canada, Volume 1, 2004. Social Sciences and Humanities Research Council. Granting Council to Knowledge Council: Renewing the Social Sciences and Humanities in Canada, Volume 3, 2005. Social Sciences and Humanities Research Council. Moving Forward As a Knowledge Council: Canada’s Place in a Competitive World. 2006. Steinberg, Sigfrid. Five Hundred Years of Printing. London: Oak Knoll Press, 1996. Willinsky, John. “How to be More of a Public Intellectual by Making your Intellectual Work More Public.” Journal of Curriculum and Pedagogy 3.1 (2006): 92–95. ---. The Access Principle: The Case for Open Access to Research and Scholarship. Cambridge, MA: MIT Press, 2006. ---. “Altering the Material Conditions of Access to the Humanities.” Ed. Peter Trifonas and Michael Peters. Deconstructing Derrida: Tasks for the New Humanities. London: Palgrave Macmillan, 2005. 118–36. ---. If Only We Knew: Increasing the Public Value of Social-Science Research. New York: Routledge, 2000.
Styles APA, Harvard, Vancouver, ISO, etc.
5

Strand, Gianna. « Contextual Vulnerability Should Guide Fair Subject Selection in Xenotransplantation Clinical Trials ». Voices in Bioethics 9 (27 mars 2023). http://dx.doi.org/10.52214/vib.v9i.11031.

Texte intégral
Résumé :
Photo 190773207 / Transplant Medicine © Victor Moussa | Dreamstime.com ABSTRACT Xenotransplant research offers hope to individuals waiting for vital organ transplants. Nascent first-in-human xenotransplantation research trials present unique ethical challenges which may translate into obligations for researchers and special considerations for institutional review boards (IRBs). Contextual vulnerability is an important consideration in reviewing proposed subject selection methods. Some recipients are uniquely prone to receiving an unfair offer to enroll in an experimental clinical trial when excluded from allograft waitlists due to psychosocial or compliance evaluations. These exclusions represent an allocational injustice. Enrolling research subjects subjectively excluded from allotransplantation into xenotransplant research is not a mechanism of fair access but rather an exploitation of an unjustly option-constrained vulnerable group by the clinical transplant system. Carefully considering contextual vulnerability can help researchers and IRBs clarify eligibility criteria for xenograft clinical trials. A requirement for simultaneous allograft co-listing can safeguard the interests of vulnerable potential subjects. INTRODUCTION In the United States, the supply of allogeneic, or human-derived, organs and tissues from living donors and cadavers available for transplant into critically ill individuals is inadequate.[i] Physicians refer only half of potentially eligible patients for transplant evaluation, and the clinical transplant team ultimately waitlists less than 30 percent.[ii] Waitlists are lengthy for those who make it through the evaluation process, and many individuals die while waiting for a transplant.[iii] In contrast to allogeneic transplants, xenotransplantation, from the prefix, xeno- meaning foreign, is the process of taking live organs or tissues from an animal for surgical placement into a human recipient. Xenografts are typically sourced from porcine animals (domestic pigs) or non-human primates (baboons) and range from simple tissues like corneas to complex vital organs like hearts, lungs, or kidneys. Scientists have explored xenotransplantation methods for decades, but research with vital organ xenotransplants has been in largely haphazard and non-controlled studies, which demonstrated only short-duration survival for recipients.[iv] Recent advances using gene modification and improved immunosuppression in single-patient attempts to transplant porcine organs into brain-dead human recipients have presented more realistic human-environment models; however, these modified xenografts have still functioned only for very short durations.[v] The limited bioethics discourse on xenotransplantation centers primarily on the ethical use of high-order animals and the risks of zoonotic infectious disease spread.[vi] Bioethics pays insufficient attention to the potential for exploitation of vulnerable individuals in need of a transplant amid growing interest in phase I clinical trials in living human subjects. Clinician-investigators in contemporary literature repeatedly recommend that these trials enroll subjects who are medically eligible for, but effectively excluded or outright denied access to, an allograft.[vii] The Food & Drug Administration (FDA) recommends xenotransplants be limited to subjects with serious or life-threatening diseases for whom adequately safe and effective alternative therapies are not available.[viii] The ethically salient difference between the investigator and the regulatory recommendations is why alternatives are not available to potential subjects: because transplant centers have subjectively denied access or because there is a clinical contraindication that proves prohibitively risky. In a notable single-patient emergency use authorization, physician-investigators offered a genetically modified porcine heart to a living male recipient after denying him access to the waitlist for a human-donor heart, citing a history of non-compliance.[ix] This case suggests that a person denied access to a transplant waitlist due to subjective compliance criteria is an appropriate research subject. The physician-investigators failed to acknowledge how offering a xenotransplant to a contextually vulnerable subject is potentially unfair. Contextual vulnerability is a specific feature of a research environment that increases a subject’s risk of harm. Bioethics discourse must address this vulnerability within the transplant research environment. This paper describes the current transplant system’s use of subjective evaluation criteria, particularly psychosocial support and compliance. Subjective evaluation criteria perpetuate discriminatory medical biases rather than advance the transplant system’s goal of additional life-years gained. Researchers designing controlled human subject trials and institutional review boards (IRBs) reviewing and approving proposed protocols must consider how disparate waitlisting practices unjustly preclude some patients from a fair opportunity to access an allograft and impacts their participation in research. It is unethical for physician-investigators to intentionally take advantage of this vulnerability, creating an exploitative and unethical transaction.[x] Protocol inclusion criteria requiring proof of simultaneous allograft listing is a feasible procedural safeguard to protect research subjects’ interests. I. Injustices in Organ Allocation Solid organ allocation systems are varied but aim for equity and efficiency in granting individuals with similar claims a fair opportunity to access the scarce resource. Allocation decisions attempt to maximize the common good of additional life-years gained.[xi] The federal oversight of allograft allocation in the US uses objective clinical metrics like blood type, immune compatibility, body size, and geographic distance to match organs to recipients to increase both graft and patient survival.[xii] Transplant centers additionally use their own evaluations to waitlist patients. Although variation exists between transplant center criteria across more objective measurements, such as lab values and concurrent diseases, significant inconsistencies arise in how they incorporate subjective factors like compliance with medical recommendations, psychosocial support, and intellectual disability into the review process.[xiii] Only 7 percent of renal transplant programs use formal criteria for subjective psychosocial assessments, while no pediatric solid organ transplant programs use formal, explicit, or uniform review to assess developmental delays and psychosocial support.[xiv] Failing to establish uniform definitions and inconsistently applying evaluation criteria in the review of potential transplant candidates introduce bias into listing practices.[xv] The center they present to and the variable evaluative criteria the center uses may discount an individual’s claim to a fair opportunity to access a scarce resource. Labeling a patient non-compliant can preclude both a referral to and placement on a waitlist for potentially suitable recipients. Compliance considerations presuppose that graft longevity will be jeopardized by an individual’s failure to adhere to pre- and post-transplant regimens. It is necessary to distinguish individuals who are intentionally non-adherent to treatment regimens and demonstrate willful disregard for medical recommendations from those who are involuntarily non-adherent due to barriers that limit full participation in care plans. The former would not be offered a spot on the waitlist for an allograft, nor would investigators offer them a spot in a xenotransplantation research study. Significant and repeated refusals to participate in treatment plans would confound the ability of researchers to collect necessary data and perform the safety monitoring required by early-phase clinical trials. Enrolling subjects who are medically eligible for a traditional transplant but denied access requires a population that is suitably compliant to participate in a clinical trial reliably and safely yet judged not worthy of receipt of a standard allograft during the evaluation process. The latter population is most disadvantaged by compliance judgments and unsubstantiated outcome predictions. Multi-center research studies have found that moderate non-adherence to immunosuppression regimens is not directly associated with poor kidney transplant outcomes.[xvi] Nor are intellectual and developmental disabilities, conditions for which transplant centers may categorically refuse evaluation, clear indicators of an individual’s ability to comply with treatment regimens.[xvii] Large cohort studies of both pediatric kidney and liver transplant recipients found no correlation between intellectual disability and graft or patient survival.[xviii] Rather, it is the perpetuation of medical biases and quality-of-life judgments that presumptively label specific populations poor transplant candidates or label their support systems insufficient, notwithstanding data demonstrating their ability to achieve successful transplant outcomes.[xix] Variability in compliance assessments and psychosocial support criteria allows medical biases to persist and disproportionately impedes waitlist access to patients from underserved populations.[xx] Low-income Medicaid patients are 2.6 times more likely to be labelled non-compliant as privately insured patients.[xxi] Additionally, the medical records of Black patients are 2.5 times more likely to contain negative descriptors like non-compliant, non-adherent, aggressive, unpleasant, and hysterical than those of white patients.[xxii] The higher prevalence of stigmatizing, compliance-based language in the medical records of minority, economically disadvantaged, and disabled persons decreases the likelihood that they will be recommended for a transplant, referred for an evaluation, placed on a waiting list, or ultimately receive a transplant.[xxiii] These populations are at heightened risk of being used in ethically inappropriate ways by xenograft research that capitalizes on this precluded access. II. Defining Vulnerability Subjective evaluation criteria in allograft waitlisting disproportionately impact some populations. This precluded access to waitlists increases their vulnerability to experience harm in experimental xenotransplant research. Fair subject selection requires the development of specific and appropriate inclusion and exclusion criteria designed to address and minimize known subject vulnerabilities.[xxiv] This process begins with physician-investigators designing research trials and IRB review of proposed trials in which some or all potential subjects are vulnerable.[xxv] The literature has no consensus on defining vulnerability in the clinical or research setting.[xxvi] Prominent guidelines such as the Common Rule and the Declaration of Helsinki focus on a categorical, consent-based approach to assessing vulnerability. The capacity to provide freely given consent is a necessary prerequisite for ethical human subject research. Still, consent alone is insufficient to establish ethical permissibility or assure that a research transaction is fair.[xxvii] Harm can occur even with informed consent if it results from coercion, undue influence, or exploitation.[xxviii] Subjects have limited ability to avoid exploitation and act as an autonomous moral agents under such circumstances. Categorical assessments label groups whose members share salient features, such as prisoners or children, as vulnerable. This shared characteristic may compromise their capacity for free consent and autonomous ability to protect their interests. Although widely used, broad categorizations create monolithic views of populations but lack clarity as to why a particular feature makes one vulnerable or what a given characteristic decidedly renders one vulnerable to.[xxix] Individuals broadly vulnerable in society, such as the severely economically disadvantaged or incarcerated, are not necessarily vulnerable as research subjects in a given proposed trial.[xxx] Categorical vulnerability is insufficient to recognize that research-related harm is specific to a particular subject potentially participating in a given protocol at a definite time and place. III. Assessing for Contextual Vulnerability Ensuring ethical consent, therefore, requires more than an accounting of capacity, competency, and freedom from coercion. This requires looking beyond voluntariness to ask whether the research offer is fair. Contextual vulnerability recognizes and addresses how some subjects are at a heightened risk of being used in ethically inappropriate ways due to research-specific situations and environments.[xxxi] Contextual vulnerability derives from a specific feature of the research environment that increases a subject’s risk of harm rather than an intrinsic categorical condition of that subject. Accounting for contextual vulnerabilities is necessary because it is ethically unsound for a competent subject to give voluntary consent to an offer that is nonetheless unfair or exploitative.[xxxii] Potential subjects excluded from accessing an allograft are contextually vulnerable in a research environment that may view their diminished range of choice as an opportunity for experimental research enrollment. Proposals to exploit or take advantage of this vulnerability places these individuals at a heightened risk of research-related harm. IV. Exploitative Transactions in Xenotransplant Research In the landmark single-patient case in Maryland, a genetically modified porcine heart was offered to the subject only because he was denied access to the allograft waitlist due to a history of noncompliance with a recommended medical regimen.[xxxiii] Physician-investigators did not define how they evaluated compliance, nor did they elaborate on how this claim demonstrated the subject’s clear and convincing contraindication to receive a conventional cardiac allograft. The subject was presented with a so-called Hobson’s choice, in which there is the illusion of free choice but ultimately there is no real choice as only one outcome, the acceptance of the experimental xenograft, is permitted; access to other choices, such as pursuing standard of care waitlisting, have been removed.[xxxiv] This case set a precedent for researchers and IRBs to view individuals denied access to conventional allografts as an appropriate subject population without acknowledgment of how this transaction is consensually exploitative. Consensual exploitation occurs when researchers intentionally and wrongfully take advantage of a subject’s vulnerability.[xxxv] In the cardiac xenotransplant case, the application of subjective evaluation criteria created a unique contextual vulnerability specific to transplant waitlist practices. Investigators took advantage of the subject’s diminished ability to access the heart transplant waitlist to obtain consent for the xenotransplant procedure. Researchers have no obligation to repair unjust conditions that they bear no responsibility for causing.[xxxvi] The wrongfulness in this case is how subjective compliance-based waitlisting criteria precluded the subject from accessing the heart transplant waitlist and denied him fair consideration in accessing the standard clinical option. Then, the transplantation team exploited this disadvantage they were morally responsible for creating. The subject agreed to the terms for an experimental and high-risk xenograft from a place of vulnerability due to the diminished range of choice specifically constructed by the policy and actions of the transplant center. The options offered by the physician-investigators to the patient were manipulated to promote the research system’s interests through the production of new scientific knowledge, not necessarily the subject’s conception of his own good.[xxxvii] V. Recommendation for Simultaneous Allograft Listing Ethical research design calls for assessments of which vulnerabilities and in which contexts researchers and IRBs ought to offer additional safeguards. Subjects should be clinically suitable to produce robust, reliable, and generalizable scientific knowledge and be presented with a fair research offer. Researchers and IRBs can achieve this through an inclusion criterion requiring that a subject has previously been placed on and maintains a spot on a waitlist for a conventional allograft. Investigators and IRBs must ensure that subjects are selected based on scientific rationale, not because they are easy to recruit due to a compromised or vulnerable position.[xxxviii] Evidence of simultaneous allograft listing would provide verification that a researcher expects a potential subject to survive the burdens of an experimental xenotransplant procedure. Individuals of advanced age or with severe life-limiting comorbidities separate from their end-stage organ failure are less likely to survive after receiving an allograft or a research xenograft. These subjects would not produce valuable data in service to the study’s endpoints or knowledge generalizable to broader patient populations. Requiring evidence of simultaneous allograft listing fulfills the ethical requirement that subjects who withdraw consent are not worse off than if they had not pursued research enrollment.[xxxix] If a subject withdraws consent before receiving a xenograft, their continued place on a waitlist ensures that their fair opportunity claim to an allograft has been maintained. Simultaneous allograft waitlisting excludes contextually vulnerable subjects clinically suitable to receive a graft but denied access to a waitlist. This inclusion criteria provides an additional safeguard against unfairly capitalizing on a subject’s marginalized status. Requiring simultaneous allograft listing will narrow the potential subject population to those clinically suitable and well situated to receive a fair opportunity to enroll in research: individuals listed for an allograft but significantly unlikely to receive or to benefit from that allograft. This potential subject population includes individuals with broadly reactive antibodies who are unlikely to match to a donor organ and individuals with anatomical contraindications who face prohibitive risks with standard allografts or bridging therapies.[xl] This subject population aligns with the FDA recommendation to enroll subjects for whom safe and effective alternatives are not available.[xli] These individuals have not had their claim to a fair opportunity transgressed by a subjective evaluation process, nor has their interest in accessing a scarce resource been unjustly discounted.[xlii] Neither the individual nor the transplant clinicians are responsible for creating a clinical or statistical disadvantage to receiving a standard allograft. An offer of research enrollment extended to this population has not been manipulated to favor one party over the other, but rather appropriately considers the interests of both parties.[xliii] Researchers have an interest in identifying subjects capable of producing scientifically valuable knowledge. Potential subjects have an interest in exploring alternatives to the high morbidity of a traditional allograft. This subject population retains the autonomous choice to pursue a standard-of-care allograft or to enroll in xenograft research. Having few treatment options available does not inexorably undermine the voluntariness of research consent or increase vulnerability.[xliv] The consent transaction is not exploitative or unfair because the transplant system is not responsible for creating this diminished range of choice. Simultaneous allograft listing represents an eligibility criterion that responds to and limits the products of subjective decisions from unjustly impacting trial enrollment. VI. Counterargument: Is Something Better Than Nothing? Some may argue that for medically exigent individuals in need of a transplant, any option to participate in research is better than no option. Autonomy and dignity, however, are not advanced when an inability to access the standard of care compels a subject’s decision to pursue experimental research. An offer of research enrollment that is unfair or exploitative remains unethical regardless of whether the subject stands to benefit. Nor should benefit be expected in early-phase research. The goals of phase I research are primarily to collect short-term safety, toxicity, dosing, and pharmacologic data, not to provide efficacious treatment.[xlv] Expanding access to experimental research trials cannot be conflated with fair access to equitable health care.[xlvi] Broadened access alone does not produce a more ethical research environment. Excluding contextually vulnerable subjects from research should not be the end goal, but rather a necessary interim to call attention to the need to redress biases and existing injustices in transplant access. Research that targets a population’s vulnerability serves to enable the continuation of unjust systems. CONCLUSION In summary, the urgent and significant clinical need for transplantable organs cannot undermine the requirements of ethical research design and conduct. Fair subject selection is a requirement of ethical clinical research.[xlvii] Potential subjects enrolled in upcoming xenograft research must be selected for their ability to answer the scientific objectives of a proposed study and must have the capacity to provide freely given informed consent within a fair research environment. Denying access to allotransplants for subjective psychosocial or compliance-based claims creates contextual vulnerability specific to transplant research that perpetuates the unfairness of the organ allocation system. Ethical research that produces valuable scientific knowledge cannot exploit the rights or interests of subjects in the process. A look beyond categorical vulnerability to contextual vulnerability highlights this currently overlooked area of exploitation. - [i] “Organ Donation Statistics,” Health Resources and Services Administration, accessed April 18, 2022, https://www.organdonor.gov/learn/organ-donation-statistics. [ii] Schold, J.D. et al., “Barriers to Evaluation and Wait Listing for Kidney Transplantation,” Clinical Journal of the American Society of Nephrology 6, no. 7 (2011): 1760-67. [iii] Abouna, G.M. “Ethical Issues in Organ Transplantation,” Medical Principles and Practice 12, no. 1 (2003): 54-69. [iv] Anderson, M. “Xenotransplantation: A Bioethical Evaluation,” Journal of Medical Ethics 32, no. 4 (2006): 205-8. [v] Lambert, J. “What Does the First Successful Test of a Pig-to-Human Kidney Transplant Mean?,” ScienceNews, October 22, 2021, https://www.sciencenews.org/article/xenotransplantation-pig-human-kidney-transplant.; Koplon, S. “Xenotransplantation: What It Is, Why It Matters and Where It Is Going,” UAB News, February 17, 2022, https://www.uabmedicine.org/-/xenotransplantation-what-it-is-why-it-matters-and-where-it-is-going. [vi] Anderson, supra; Daar, A.S. “Ethics of Xenotransplantation: Animal Issues, Consent, and Likely Transformation of Transplant Ethics,” World Journal of Surgery 21, no. 9 (1997): 975-82.; Kim, M.K., et al., “The International Xenotransplantation Association Consensus Statement on Conditions for Undertaking Clinical Trials of Xenocorneal Transplantation,” Xenotransplantation 21, no. 5 (2014): 420-30. [vii] Abouna, supra; Pierson, R.N., et al., “Pig-to-Human Heart Transplantation: Who Goes First?,” American Journal of Transplantation 20, no. 10 (2020): 2669-74. [viii] Food and Drug Administration, Source Animal, Product, Preclinical, and Clinical Issues Concerning the Use of Xenotransplantation Products in Humans (Silver Spring, MD, 2016), 43, https://www.fda.gov/media/102126/download. [ix] Wang, W., et al., “First Pig-to-Human Heart Transplantation,” Innovation (Camb) 3, no. 2 (2022): 100223. [x] Carse, A.L. and Little, M.O. “Exploitation and the Enterprise of Medical Research,” in Exploitation and Developing Countries, ed. J. S. Hawkins and E. J. Emanuel (Princeton, NJ: Princeton University Press, 2008), 206-45. [xi] Halpern, S.D. and Goldberg, D.“Allocating Organs to Cognitively Impaired Patients,” New England Journal of Medicine 376, no. 4 (2017): 299-301. [xii] “How We Match Organs,” United Network for Organ Sharing, accessed April 18, 2022, https://unos.org/transplant/how-we-match-organs/. [xiii] UW Medicine Harborview Medical Center – UW Medical Center University of Washington Physicians, Selection Criteria: Kidney Transplant Recipient (Seattle, WA, 2019), 1-3, https://www.uwmedicine.org/sites/stevie/files/2020-11/UW-Medicine-Kidney-Selection-Criteria-UH2701.pdf; Penn Medicine, Kidney Transplant Selection Criteria (Philadelphia, PA: Hospital of the University of Pennsylvania), 1-2. https://www.pennmedicine.org/media/documents/instructions/transplant/kidney_transplant_selection_criteria.ashx. [xiv] Dudzinski, D.M. “Shifting to Other Justice Issues: Examining Listing Practices,” American Journal of Bioethics 4, no. 4 (2004): 35-37.; Richards, C.T., et al., “Use of Neurodevelopmental Delay in Pediatric Solid Organ Transplant Listing Decisions: Inconsistencies in Standards Across Major Pediatric Transplant Centers,” Pediatric Transplant 13, no. 7 (2009): 843-50. [xv] Dudzinski, supra. [xvi] Israni, A.K., et al., “Electronically Measured Adherence to Immunosuppressive Medications and Kidney Function after Deceased Donor Kidney Transplantation,” Clinical Transplantation 25, no. 2 (2011): 124-31. [xvii] National Council on Disability, Organ Transplant Discrimination against People with Disabilities (Washington, DC, 2019), 25-35, https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf.; Halpern and Goldberg, supra. [xviii] Wightman, A., et al., “Prevalence and Outcomes of Renal Transplantation in Children with Intellectual Disability,” Pediatric Transplantation 18, no. 7 (2014): 714-19.; Wightman, A., et al., “Prevalence and Outcomes of Liver Transplantation in Children with Intellectual Disability,” Journal of Pediatric Gastroenterology and Nutrition 62, no. 6 (2016): 808-12. [xix] Richards et al., supra; Godown, J., et al., “Heart Transplantation in Children with Down Syndrome,” Journal of the American Heart Association 11, no. 10 (2022): e024883. [xx] Silverman, H. and Odonkor, P.N. “Reevaluating the Ethical Issues in Porcine-to-Human Heart Xenotransplantation,” Hastings Center Report 52, no. 5 (2022): 32-42. [xxi] Sun, M., et al., “Negative Patient Descriptors: Documenting Racial Bias in the Electronic Health Record,” Health Affairs 41, no. 2 (2022): 203-11. [xxii] Ibid. [xxiii] Dudzinski, supra; Garg, P.P., et al., “Reducing Racial Disparities in Transplant Activation: Whom Should We Target?,” American Journal of Kidney Diseases 37, no. 5 (2001): 921-31. [xxiv] Emanuel, E.J., et al., “What Makes Clinical Research Ethical?,” JAMA 283, no. 20 (2000): 2701-11. [xxv] 45 C.F.R. 46.111(b). [xxvi] Hurst, S.A. “Vulnerability in Research and Health Care; Describing the Elephant in the Room?,” Bioethics 22, no. 4 (2008): 191-202. [xxvii] The Nuremberg Code, Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law 2, no. 10: 181-2 (Washington, DC: U.S. Government Printing Office, 1949); Kipnis, K. “Vulnerability in Research Subjects: A Bioethical Taxonomy. Ethical and Policy Issues in Research Involving Human Participants.,” in Ethical and Policy Issues in Research Involving Human Participants, (Bethesda, MD: National Bioethics Advisory Commission, August 2001), G1-G13. [xxviii] Dickert, N. and Grady, C. “Incentives for Research Participants,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 386-96. [xxix] Gordon, B.G. “Vulnerability in Research: Basic Ethical Concepts and General Approach to Review,” Ochsner Journal 20, no. 1 (2020): 34-38. [xxx] Kipnis, supra. [xxxi] Hurst, supra. [xxxii] Lamkin, M. and Elliott, C. “Avoiding Exploitation in Phase I Clinical Trials: More Than (Un)Just Compensation,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 52-63.; Jansen, L.A. “A Closer Look at the Bad Deal Trial: Beyond Clinical Equipoise,” Hastings Center Report 35, no. 5 (2005): 29-36. [xxxiii] Wang et al., supra; Silverman and Odonkor, supra. [xxxiv] Silverman and Odonkor, supra. [xxxv] Carse and Little, supra. [xxxvi] Wertheimer, A. “Exploitation in Clinical Research,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 201-210. [xxxvii] Brock, D.W. “Philosophical Justifications of Informed Consent in Research,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 606-612. [xxxviii] Council for International Organizations of Medical Sciences, International Ethical Guidelines for Health-Related Research Involving Humans (Geneva: World Health Organization, 2016), https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf. [xxxix] Ibid. [xl] Pierson et al., supra. [xli] Food and Drug Administration, supra. [xlii] Hurst, supra. [xliii] Kipnis, supra. [xliv] Hawkins, J.S. and Emanuel, E.J. “Introduction: Why Exploitation?,” in Exploitation and Developing Countries, ed. J. S. Hawkins and E. J. Emanuel (Princeton, NJ: Princeton Universiy Pres, 2008), 1-20. [xlv] Muglia, J.J. and DiGiovanna, J.J. “Phase 1 Clinical Trials,” Journal of Cutaneous Medicine and Surgery 2, no. 4 (1998): 236-41. [xlvi] Dresser, R. “The Role of Patient Advocates and Public Representatives in Research,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 231-41. [xlvii] MacKay, D. and Saylor, K.W. “Four Faces of Fair Subject Selection,” The American Journal of Bioethics 20, no. 2 (2020): 5-19.
Styles APA, Harvard, Vancouver, ISO, etc.
Nous offrons des réductions sur tous les plans premium pour les auteurs dont les œuvres sont incluses dans des sélections littéraires thématiques. Contactez-nous pour obtenir un code promo unique!

Vers la bibliographie