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The N3C governance ecosystem: A model socio-technical partnership for the future of collaborative analytics at scale
- Christine Suver, Jeremy Harper, Johanna Loomba, Mary Saltz, Julian Solway, Alfred Jerrod Anzalone, Kellie Walters, Emily Pfaff, Anita Walden, Julie McMurry, Christopher G. Chute, Melissa Haendel
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- Journal:
- Journal of Clinical and Translational Science / Volume 7 / Issue 1 / 2023
- Published online by Cambridge University Press:
- 14 November 2023, e252
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The National COVID Cohort Collaborative (N3C) is a public–private–government partnership established during the Coronavirus pandemic to create a centralized data resource called the “N3C data enclave.” This resource contains individual-level health data from participating healthcare sites nationwide to support rapid collaborative analytics. N3C has enabled analytics within a cloud-based enclave of data from electronic health records from over 17 million people (with and without COVID-19) in the USA. To achieve this goal of a shared data resource, N3C implemented a shared governance strategy involving stakeholders in decision-making. The approach leveraged best practices in data stewardship and team science to rapidly enable COVID-19-related research at scale while respecting the privacy of data subjects and participating institutions. N3C balanced equitable access to data, team-based scientific productivity, and individual professional recognition – a key incentive for academic researchers. This governance approach makes N3C research sustainable and effective beyond the initial days of the pandemic. N3C demonstrated that shared governance can overcome traditional barriers to data sharing without compromising data security and trust. The governance innovations described herein are a helpful framework for other privacy-preserving data infrastructure programs and provide a working model for effective team science beyond COVID-19.
Contributors
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- By Rose Teteki Abbey, K. C. Abraham, David Tuesday Adamo, LeRoy H. Aden, Efrain Agosto, Victor Aguilan, Gillian T. W. Ahlgren, Charanjit Kaur AjitSingh, Dorothy B E A Akoto, Giuseppe Alberigo, Daniel E. Albrecht, Ruth Albrecht, Daniel O. Aleshire, Urs Altermatt, Anand Amaladass, Michael Amaladoss, James N. Amanze, Lesley G. Anderson, Thomas C. Anderson, Victor Anderson, Hope S. Antone, María Pilar Aquino, Paula Arai, Victorio Araya Guillén, S. Wesley Ariarajah, Ellen T. Armour, Brett Gregory Armstrong, Atsuhiro Asano, Naim Stifan Ateek, Mahmoud Ayoub, John Alembillah Azumah, Mercedes L. García Bachmann, Irena Backus, J. Wayne Baker, Mieke Bal, Lewis V. Baldwin, William Barbieri, António Barbosa da Silva, David Basinger, Bolaji Olukemi Bateye, Oswald Bayer, Daniel H. Bays, Rosalie Beck, Nancy Elizabeth Bedford, Guy-Thomas Bedouelle, Chorbishop Seely Beggiani, Wolfgang Behringer, Christopher M. Bellitto, Byard Bennett, Harold V. Bennett, Teresa Berger, Miguel A. Bernad, Henley Bernard, Alan E. Bernstein, Jon L. Berquist, Johannes Beutler, Ana María Bidegain, Matthew P. Binkewicz, Jennifer Bird, Joseph Blenkinsopp, Dmytro Bondarenko, Paulo Bonfatti, Riet en Pim Bons-Storm, Jessica A. Boon, Marcus J. Borg, Mark Bosco, Peter C. Bouteneff, François Bovon, William D. Bowman, Paul S. Boyer, David Brakke, Richard E. Brantley, Marcus Braybrooke, Ian Breward, Ênio José da Costa Brito, Jewel Spears Brooker, Johannes Brosseder, Nicholas Canfield Read Brown, Robert F. Brown, Pamela K. Brubaker, Walter Brueggemann, Bishop Colin O. Buchanan, Stanley M. Burgess, Amy Nelson Burnett, J. Patout Burns, David B. Burrell, David Buttrick, James P. Byrd, Lavinia Byrne, Gerado Caetano, Marcos Caldas, Alkiviadis Calivas, William J. Callahan, Salvatore Calomino, Euan K. Cameron, William S. Campbell, Marcelo Ayres Camurça, Daniel F. Caner, Paul E. Capetz, Carlos F. Cardoza-Orlandi, Patrick W. Carey, Barbara Carvill, Hal Cauthron, Subhadra Mitra Channa, Mark D. Chapman, James H. Charlesworth, Kenneth R. Chase, Chen Zemin, Luciano Chianeque, Philip Chia Phin Yin, Francisca H. Chimhanda, Daniel Chiquete, John T. Chirban, Soobin Choi, Robert Choquette, Mita Choudhury, Gerald Christianson, John Chryssavgis, Sejong Chun, Esther Chung-Kim, Charles M. A. Clark, Elizabeth A. Clark, Sathianathan Clarke, Fred Cloud, John B. Cobb, W. Owen Cole, John A Coleman, John J. Collins, Sylvia Collins-Mayo, Paul K. Conkin, Beth A. Conklin, Sean Connolly, Demetrios J. Constantelos, Michael A. Conway, Paula M. Cooey, Austin Cooper, Michael L. Cooper-White, Pamela Cooper-White, L. William Countryman, Sérgio Coutinho, Pamela Couture, Shannon Craigo-Snell, James L. Crenshaw, David Crowner, Humberto Horacio Cucchetti, Lawrence S. Cunningham, Elizabeth Mason Currier, Emmanuel Cutrone, Mary L. Daniel, David D. Daniels, Robert Darden, Rolf Darge, Isaiah Dau, Jeffry C. Davis, Jane Dawson, Valentin Dedji, John W. de Gruchy, Paul DeHart, Wendy J. Deichmann Edwards, Miguel A. De La Torre, George E. Demacopoulos, Thomas de Mayo, Leah DeVun, Beatriz de Vasconcellos Dias, Dennis C. Dickerson, John M. Dillon, Luis Miguel Donatello, Igor Dorfmann-Lazarev, Susanna Drake, Jonathan A. Draper, N. Dreher Martin, Otto Dreydoppel, Angelyn Dries, A. J. Droge, Francis X. D'Sa, Marilyn Dunn, Nicole Wilkinson Duran, Rifaat Ebied, Mark J. Edwards, William H. Edwards, Leonard H. Ehrlich, Nancy L. Eiesland, Martin Elbel, J. Harold Ellens, Stephen Ellingson, Marvin M. Ellison, Robert Ellsberg, Jean Bethke Elshtain, Eldon Jay Epp, Peter C. Erb, Tassilo Erhardt, Maria Erling, Noel Leo Erskine, Gillian R. Evans, Virginia Fabella, Michael A. Fahey, Edward Farley, Margaret A. Farley, Wendy Farley, Robert Fastiggi, Seena Fazel, Duncan S. Ferguson, Helwar Figueroa, Paul Corby Finney, Kyriaki Karidoyanes FitzGerald, Thomas E. FitzGerald, John R. Fitzmier, Marie Therese Flanagan, Sabina Flanagan, Claude Flipo, Ronald B. Flowers, Carole Fontaine, David Ford, Mary Ford, Stephanie A. Ford, Jim Forest, William Franke, Robert M. Franklin, Ruth Franzén, Edward H. Friedman, Samuel Frouisou, Lorelei F. Fuchs, Jojo M. Fung, Inger Furseth, Richard R. Gaillardetz, Brandon Gallaher, China Galland, Mark Galli, Ismael García, Tharscisse Gatwa, Jean-Marie Gaudeul, Luis María Gavilanes del Castillo, Pavel L. Gavrilyuk, Volney P. Gay, Metropolitan Athanasios Geevargis, Kondothra M. George, Mary Gerhart, Simon Gikandi, Maurice Gilbert, Michael J. Gillgannon, Verónica Giménez Beliveau, Terryl Givens, Beth Glazier-McDonald, Philip Gleason, Menghun Goh, Brian Golding, Bishop Hilario M. Gomez, Michelle A. Gonzalez, Donald K. Gorrell, Roy Gottfried, Tamara Grdzelidze, Joel B. Green, Niels Henrik Gregersen, Cristina Grenholm, Herbert Griffiths, Eric W. Gritsch, Erich S. Gruen, Christoffer H. Grundmann, Paul H. Gundani, Jon P. Gunnemann, Petre Guran, Vidar L. Haanes, Jeremiah M. Hackett, Getatchew Haile, Douglas John Hall, Nicholas Hammond, Daphne Hampson, Jehu J. Hanciles, Barry Hankins, Jennifer Haraguchi, Stanley S. Harakas, Anthony John Harding, Conrad L. Harkins, J. William Harmless, Marjory Harper, Amir Harrak, Joel F. Harrington, Mark W. Harris, Susan Ashbrook Harvey, Van A. Harvey, R. Chris Hassel, Jione Havea, Daniel Hawk, Diana L. Hayes, Leslie Hayes, Priscilla Hayner, S. Mark Heim, Simo Heininen, Richard P. Heitzenrater, Eila Helander, David Hempton, Scott H. Hendrix, Jan-Olav Henriksen, Gina Hens-Piazza, Carter Heyward, Nicholas J. Higham, David Hilliard, Norman A. Hjelm, Peter C. Hodgson, Arthur Holder, M. Jan Holton, Dwight N. Hopkins, Ronnie Po-chia Hsia, Po-Ho Huang, James Hudnut-Beumler, Jennifer S. Hughes, Leonard M. Hummel, Mary E. Hunt, Laennec Hurbon, Mark Hutchinson, Susan E. Hylen, Mary Beth Ingham, H. Larry Ingle, Dale T. Irvin, Jon Isaak, Paul John Isaak, Ada María Isasi-Díaz, Hans Raun Iversen, Margaret C. Jacob, Arthur James, Maria Jansdotter-Samuelsson, David Jasper, Werner G. Jeanrond, Renée Jeffery, David Lyle Jeffrey, Theodore W. Jennings, David H. Jensen, Robin Margaret Jensen, David Jobling, Dale A. Johnson, Elizabeth A. Johnson, Maxwell E. Johnson, Sarah Johnson, Mark D. Johnston, F. Stanley Jones, James William Jones, John R. Jones, Alissa Jones Nelson, Inge Jonsson, Jan Joosten, Elizabeth Judd, Mulambya Peggy Kabonde, Robert Kaggwa, Sylvester Kahakwa, Isaac Kalimi, Ogbu U. Kalu, Eunice Kamaara, Wayne C. Kannaday, Musimbi Kanyoro, Veli-Matti Kärkkäinen, Frank Kaufmann, Léon Nguapitshi Kayongo, Richard Kearney, Alice A. Keefe, Ralph Keen, Catherine Keller, Anthony J. Kelly, Karen Kennelly, Kathi Lynn Kern, Fergus Kerr, Edward Kessler, George Kilcourse, Heup Young Kim, Kim Sung-Hae, Kim Yong-Bock, Kim Yung Suk, Richard King, Thomas M. King, Robert M. Kingdon, Ross Kinsler, Hans G. Kippenberg, Cheryl A. Kirk-Duggan, Clifton Kirkpatrick, Leonid Kishkovsky, Nadieszda Kizenko, Jeffrey Klaiber, Hans-Josef Klauck, Sidney Knight, Samuel Kobia, Robert Kolb, Karla Ann Koll, Heikki Kotila, Donald Kraybill, Philip D. W. Krey, Yves Krumenacker, Jeffrey Kah-Jin Kuan, Simanga R. Kumalo, Peter Kuzmic, Simon Shui-Man Kwan, Kwok Pui-lan, André LaCocque, Stephen E. Lahey, John Tsz Pang Lai, Emiel Lamberts, Armando Lampe, Craig Lampe, Beverly J. Lanzetta, Eve LaPlante, Lizette Larson-Miller, Ariel Bybee Laughton, Leonard Lawlor, Bentley Layton, Robin A. Leaver, Karen Lebacqz, Archie Chi Chung Lee, Marilyn J. Legge, Hervé LeGrand, D. L. LeMahieu, Raymond Lemieux, Bill J. Leonard, Ellen M. Leonard, Outi Leppä, Jean Lesaulnier, Nantawan Boonprasat Lewis, Henrietta Leyser, Alexei Lidov, Bernard Lightman, Paul Chang-Ha Lim, Carter Lindberg, Mark R. Lindsay, James R. Linville, James C. Livingston, Ann Loades, David Loades, Jean-Claude Loba-Mkole, Lo Lung Kwong, Wati Longchar, Eleazar López, David W. Lotz, Andrew Louth, Robin W. Lovin, William Luis, Frank D. Macchia, Diarmaid N. J. MacCulloch, Kirk R. MacGregor, Marjory A. MacLean, Donald MacLeod, Tomas S. Maddela, Inge Mager, Laurenti Magesa, David G. Maillu, Fortunato Mallimaci, Philip Mamalakis, Kä Mana, Ukachukwu Chris Manus, Herbert Robinson Marbury, Reuel Norman Marigza, Jacqueline Mariña, Antti Marjanen, Luiz C. L. Marques, Madipoane Masenya (ngwan'a Mphahlele), Caleb J. D. Maskell, Steve Mason, Thomas Massaro, Fernando Matamoros Ponce, András Máté-Tóth, Odair Pedroso Mateus, Dinis Matsolo, Fumitaka Matsuoka, John D'Arcy May, Yelena Mazour-Matusevich, Theodore Mbazumutima, John S. McClure, Christian McConnell, Lee Martin McDonald, Gary B. McGee, Thomas McGowan, Alister E. McGrath, Richard J. McGregor, John A. McGuckin, Maud Burnett McInerney, Elsie Anne McKee, Mary B. McKinley, James F. McMillan, Ernan McMullin, Kathleen E. McVey, M. Douglas Meeks, Monica Jyotsna Melanchthon, Ilie Melniciuc-Puica, Everett Mendoza, Raymond A. Mentzer, William W. Menzies, Ina Merdjanova, Franziska Metzger, Constant J. Mews, Marvin Meyer, Carol Meyers, Vasile Mihoc, Gunner Bjerg Mikkelsen, Maria Inêz de Castro Millen, Clyde Lee Miller, Bonnie J. Miller-McLemore, Alexander Mirkovic, Paul Misner, Nozomu Miyahira, R. W. L. Moberly, Gerald Moede, Aloo Osotsi Mojola, Sunanda Mongia, Rebeca Montemayor, James Moore, Roger E. Moore, Craig E. Morrison O.Carm, Jeffry H. Morrison, Keith Morrison, Wilson J. Moses, Tefetso Henry Mothibe, Mokgethi Motlhabi, Fulata Moyo, Henry Mugabe, Jesse Ndwiga Kanyua Mugambi, Peggy Mulambya-Kabonde, Robert Bruce Mullin, Pamela Mullins Reaves, Saskia Murk Jansen, Heleen L. Murre-Van den Berg, Augustine Musopole, Isaac M. T. Mwase, Philomena Mwaura, Cecilia Nahnfeldt, Anne Nasimiyu Wasike, Carmiña Navia Velasco, Thulani Ndlazi, Alexander Negrov, James B. Nelson, David G. Newcombe, Carol Newsom, Helen J. Nicholson, George W. E. Nickelsburg, Tatyana Nikolskaya, Damayanthi M. A. Niles, Bertil Nilsson, Nyambura Njoroge, Fidelis Nkomazana, Mary Beth Norton, Christian Nottmeier, Sonene Nyawo, Anthère Nzabatsinda, Edward T. Oakes, Gerald O'Collins, Daniel O'Connell, David W. Odell-Scott, Mercy Amba Oduyoye, Kathleen O'Grady, Oyeronke Olajubu, Thomas O'Loughlin, Dennis T. Olson, J. Steven O'Malley, Cephas N. Omenyo, Muriel Orevillo-Montenegro, César Augusto Ornellas Ramos, Agbonkhianmeghe E. Orobator, Kenan B. Osborne, Carolyn Osiek, Javier Otaola Montagne, Douglas F. Ottati, Anna May Say Pa, Irina Paert, Jerry G. Pankhurst, Aristotle Papanikolaou, Samuele F. Pardini, Stefano Parenti, Peter Paris, Sung Bae Park, Cristián G. Parker, Raquel Pastor, Joseph Pathrapankal, Daniel Patte, W. Brown Patterson, Clive Pearson, Keith F. Pecklers, Nancy Cardoso Pereira, David Horace Perkins, Pheme Perkins, Edward N. Peters, Rebecca Todd Peters, Bishop Yeznik Petrossian, Raymond Pfister, Peter C. Phan, Isabel Apawo Phiri, William S. F. Pickering, Derrick G. Pitard, William Elvis Plata, Zlatko Plese, John Plummer, James Newton Poling, Ronald Popivchak, Andrew Porter, Ute Possekel, James M. Powell, Enos Das Pradhan, Devadasan Premnath, Jaime Adrían Prieto Valladares, Anne Primavesi, Randall Prior, María Alicia Puente Lutteroth, Eduardo Guzmão Quadros, Albert Rabil, Laurent William Ramambason, Apolonio M. Ranche, Vololona Randriamanantena Andriamitandrina, Lawrence R. Rast, Paul L. Redditt, Adele Reinhartz, Rolf Rendtorff, Pål Repstad, James N. Rhodes, John K. Riches, Joerg Rieger, Sharon H. Ringe, Sandra Rios, Tyler Roberts, David M. Robinson, James M. Robinson, Joanne Maguire Robinson, Richard A. H. Robinson, Roy R. Robson, Jack B. Rogers, Maria Roginska, Sidney Rooy, Rev. Garnett Roper, Maria José Fontelas Rosado-Nunes, Andrew C. Ross, Stefan Rossbach, François Rossier, John D. Roth, John K. Roth, Phillip Rothwell, Richard E. Rubenstein, Rosemary Radford Ruether, Markku Ruotsila, John E. Rybolt, Risto Saarinen, John Saillant, Juan Sanchez, Wagner Lopes Sanchez, Hugo N. Santos, Gerhard Sauter, Gloria L. Schaab, Sandra M. Schneiders, Quentin J. Schultze, Fernando F. Segovia, Turid Karlsen Seim, Carsten Selch Jensen, Alan P. F. Sell, Frank C. Senn, Kent Davis Sensenig, Damían Setton, Bal Krishna Sharma, Carolyn J. Sharp, Thomas Sheehan, N. Gerald Shenk, Christian Sheppard, Charles Sherlock, Tabona Shoko, Walter B. Shurden, Marguerite Shuster, B. Mark Sietsema, Batara Sihombing, Neil Silberman, Clodomiro Siller, Samuel Silva-Gotay, Heikki Silvet, John K. Simmons, Hagith Sivan, James C. Skedros, Abraham Smith, Ashley A. Smith, Ted A. Smith, Daud Soesilo, Pia Søltoft, Choan-Seng (C. S.) Song, Kathryn Spink, Bryan Spinks, Eric O. Springsted, Nicolas Standaert, Brian Stanley, Glen H. Stassen, Karel Steenbrink, Stephen J. Stein, Andrea Sterk, Gregory E. Sterling, Columba Stewart, Jacques Stewart, Robert B. Stewart, Cynthia Stokes Brown, Ken Stone, Anne Stott, Elizabeth Stuart, Monya Stubbs, Marjorie Hewitt Suchocki, David Kwang-sun Suh, Scott W. Sunquist, Keith Suter, Douglas Sweeney, Charles H. Talbert, Shawqi N. Talia, Elsa Tamez, Joseph B. Tamney, Jonathan Y. Tan, Yak-Hwee Tan, Kathryn Tanner, Feiya Tao, Elizabeth S. Tapia, Aquiline Tarimo, Claire Taylor, Mark Lewis Taylor, Bishop Abba Samuel Wolde Tekestebirhan, Eugene TeSelle, M. Thomas Thangaraj, David R. Thomas, Andrew Thornley, Scott Thumma, Marcelo Timotheo da Costa, George E. “Tink” Tinker, Ola Tjørhom, Karen Jo Torjesen, Iain R. Torrance, Fernando Torres-Londoño, Archbishop Demetrios [Trakatellis], Marit Trelstad, Christine Trevett, Phyllis Trible, Johannes Tromp, Paul Turner, Robert G. Tuttle, Archbishop Desmond Tutu, Peter Tyler, Anders Tyrberg, Justin Ukpong, Javier Ulloa, Camillus Umoh, Kristi Upson-Saia, Martina Urban, Monica Uribe, Elochukwu Eugene Uzukwu, Richard Vaggione, Gabriel Vahanian, Paul Valliere, T. J. Van Bavel, Steven Vanderputten, Peter Van der Veer, Huub Van de Sandt, Louis Van Tongeren, Luke A. Veronis, Noel Villalba, Ramón Vinke, Tim Vivian, David Voas, Elena Volkova, Katharina von Kellenbach, Elina Vuola, Timothy Wadkins, Elaine M. Wainwright, Randi Jones Walker, Dewey D. Wallace, Jerry Walls, Michael J. Walsh, Philip Walters, Janet Walton, Jonathan L. Walton, Wang Xiaochao, Patricia A. Ward, David Harrington Watt, Herold D. Weiss, Laurence L. Welborn, Sharon D. Welch, Timothy Wengert, Traci C. West, Merold Westphal, David Wetherell, Barbara Wheeler, Carolinne White, Jean-Paul Wiest, Frans Wijsen, Terry L. Wilder, Felix Wilfred, Rebecca Wilkin, Daniel H. Williams, D. Newell Williams, Michael A. Williams, Vincent L. Wimbush, Gabriele Winkler, Anders Winroth, Lauri Emílio Wirth, James A. Wiseman, Ebba Witt-Brattström, Teofil Wojciechowski, John Wolffe, Kenman L. Wong, Wong Wai Ching, Linda Woodhead, Wendy M. Wright, Rose Wu, Keith E. Yandell, Gale A. Yee, Viktor Yelensky, Yeo Khiok-Khng, Gustav K. K. Yeung, Angela Yiu, Amos Yong, Yong Ting Jin, You Bin, Youhanna Nessim Youssef, Eliana Yunes, Robert Michael Zaller, Valarie H. Ziegler, Barbara Brown Zikmund, Joyce Ann Zimmerman, Aurora Zlotnik, Zhuo Xinping
- Edited by Daniel Patte, Vanderbilt University, Tennessee
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- Book:
- The Cambridge Dictionary of Christianity
- Published online:
- 05 August 2012
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- 20 September 2010, pp xi-xliv
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Neo-liberal economic practices and population health: a cross-national analysis, 1980–2004
- Melissa Tracy, Margaret E. Kruk, Christine Harper, Sandro Galea
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- Journal:
- Health Economics, Policy and Law / Volume 5 / Issue 2 / April 2010
- Published online by Cambridge University Press:
- 01 April 2010, pp. 171-199
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Although there has been substantial debate and research concerning the economic impact of neo-liberal practices, there is a paucity of research about the potential relation between neo-liberal economic practices and population health. We assessed the extent to which neo-liberal policies and practices are associated with population health at the national level. We collected data on 119 countries between 1980 and 2004. We measured neo-liberalism using the Fraser Institute’s Economic Freedom of the World (EFW) Index, which gives an overall score as well as a score for each of five different aspects of neo-liberal economic practices: (1) size of government, (2) legal structure and security of property rights, (3) access to sound money, (4) freedom to exchange with foreigners and (5) regulation of credit, labor and business. Our measure of population health was under-five mortality. We controlled for potential mediators (income distribution, social capital and openness of political institutions) and confounders (female literacy, total population, rural population, fertility, gross domestic product per capita and time period). In longitudinal multivariable analyses, we found that the EFW index did not have an effect on child mortality but that two of its components: improved security of property rights and access to sound money were associated with lower under-five mortality (p = 0.017 and p = 0.024, respectively). When stratifying the countries by level of income, less regulation of credit, labor and business was associated with lower under-five mortality in high-income countries (p = 0.001). None of the EFW components were significantly associated with under-five mortality in low-income countries. This analysis suggests that the concept of ‘neo-liberalism’ is not a monolithic entity in its relation to health and that some ‘neo-liberal’ policies are consistent with improved population health. Further work is needed to corroborate or refute these findings.
Contributors
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- By Anna L. David, Christine de Die-Smulders, Joy Delhanty, Anick De Vos, Guido de Wert, Alpesh Doshi, Kay Elder, Johannes Evers, Joep Geraedts, Joyce C. Harper, Alison Lashwood, Caroline Mackie Ogilvie, Markus Montag, Santiago Munné, Monica Parriego, Sjoerd Repping, Maartje van Rij, Charles H. Rodeck, Paul N. Scriven, Paul Serhal, Karen Sermon, Alan Thornhill, Anna Veiga, Katrin van der Ven, Hans van der Ven, Francesca Vidal, Dagan Wells, Leeanda Wilton
- Edited by Joyce Harper, University College London
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- Book:
- Preimplantation Genetic Diagnosis
- Published online:
- 09 November 2009
- Print publication:
- 28 May 2009, pp vi-vii
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8 - The influence of the nature of the disorder on the consultation
- Christine Evans
- Foreword by Peter Harper
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- Book:
- Genetic Counselling
- Published online:
- 12 August 2009
- Print publication:
- 09 March 2006, pp 133-152
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Summary
The previous chapters have focused on different aspects of the genetic counselling encounter and have put particular emphasis on the importance of the uniqueness of the individual or family. The counsellor respects that uniqueness by offering an appropriately attuned and facilitating relationship which forms the solid core of a consultation. It determines how the consultation proceeds and is the context within which the different genetic consultations take place. There may be a single consultation where the emphasis changes at different stages of the counselling process, or several meetings with a different emphasis in each one. This chapter begins with a common framework which can be applied to all genetic counselling. It moves to focusing on how four different disorders, by their very nature and their implications, will influence the focus and process of the interview and, consequently, the emphasis placed by the counsellor.
The common denominators which apply to all consultations
Genetic counselling may appear to revolve around a central element of information both giving and receiving, but the process does not follow a straight line of an individual asking a question which is then answered. The counsellor makes a series of interventions and the way the individual or family responds will determine the subsequent direction. The counsellor is constantly observing responses and reviewing and adjusting the path of the consultation correspondingly. For instance, the process begins with a question being asked and that may take the form of a symptom, a worry, a request for information or many other forms.
Genetic Counselling
- A Psychological Approach
- Christine Evans
- Foreword by Peter Harper
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- Published online:
- 12 August 2009
- Print publication:
- 09 March 2006
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The role of a genetic counsellor is to mediate between the rapid advances in molecular medicine and an individual's ability to understand and manage the risks of their inheritance. Counsellors therefore need to be fully in command of the psychological impact of their communications. Written by a psychiatrist who later became a psychotherapist, this manual is essential reading for counsellors of all disciplines. It examines the psychological processes and explains why people approach and respond differently. Effective genetic counselling requires a knowledge of attachment behaviour and non-directiveness, and an in-depth understanding of empathy in order to help individuals contain anxiety and process grief and so facilitate their decision-making or help with the effects of reviewing a test result. Along with an up-to-date discussion of similar approaches in family therapy and psychoanalysis, the effect of counselling on the counsellor is also examined creatively in order to enrich the interview with clients.
10 - The interview and non-directiveness
- Christine Evans
- Foreword by Peter Harper
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- Book:
- Genetic Counselling
- Published online:
- 12 August 2009
- Print publication:
- 09 March 2006, pp 175-186
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Summary
Debating the possibility of non-directiveness
The earlier chapters have presented a theoretical underpinning for genetic counselling (stress), a framework for understanding differences in individual behaviour (attachment theory) and various micro-skills (empathy, etc.) to furnish the counsellor with an appropriate repertoire. This final chapter returns to looking at the overall picture, using a wide-angled lens to explore ‘the culture’ of genetic counselling. The terms genetic counselling and non-directiveness have become synonymous and seem to be intertwined in spite of the efforts of a number of authors to disentangle them and clarify meanings. Clarke (1991) has debated the possibility of achieving non-directiveness and further, whether it is desirable. Wolff and Jung (1995) consider that the demarcation from eugenics, the training of counsellors specifically for genetics and the infiltration of psychological counselling concepts have contributed to the idea of respect for patient autonomy in genetic counselling. They propose the term non-directive be dropped and that a more psychotherapeutic approach of exploring meaning and personal significance is more appropriate. Expressing a similar sentiment Weil (2003) considers that the term non-directive is a historic relic and an impediment to creative theory and practice. He proposes that the relevant components of balanced information without the counsellor imposing values be retained and that the central ethos should be to bring the psychosocial into every aspect of the work. In addition, there may be a difference in the counsellor's and patient's perception of the neutrality of the counsellor (Shiloh and Saxe, 1989).
Frontmatter
- Christine Evans
- Foreword by Peter Harper
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- Book:
- Genetic Counselling
- Published online:
- 12 August 2009
- Print publication:
- 09 March 2006, pp i-vi
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References
- Christine Evans
- Foreword by Peter Harper
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- Book:
- Genetic Counselling
- Published online:
- 12 August 2009
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- 09 March 2006, pp 187-198
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9 - The effect on the counsellor
- Christine Evans
- Foreword by Peter Harper
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- Book:
- Genetic Counselling
- Published online:
- 12 August 2009
- Print publication:
- 09 March 2006, pp 153-174
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Summary
This chapter explores how working in medical genetics can be emotionally challenging for the counsellor and examines it under two broad headings: factors relating to the nature of the task and countertransference issues. The former relates to the fact that genetic counselling is inherently stressful and very painful for families and individuals. The latter refers to factors arising as a result of working with a particular individual, countertransference issues. The counsellor needs a diversity of the skills to work effectively to help and not be overwhelmed. This chapter will demonstrate how the counsellor's self-exploration can be personally beneficial and, if understood, it can enrich the overall encounter by adding another dimension of meaning to the behaviour of the patient and the interactional relationship. Regular supervision creates a safe psychological space for exploration and learning.
The nature of the genetic counselling task
The nature of the counsellor's task is complex and has been one of the main areas of interest in this book. At this point it is considered in relation to two areas: the particular skills mix required and the giving of ‘bad news’.
The skills
required Working in the field of medical genetics brings many exciting opportunities to study a speciality in the forefront of scientific medicine whilst also being in touch with the human side of the work, talking and working with people. This is rewarding and affords the counsellor the opportunity to develop these seemingly different aspects of the self, the scientific and more emotionally-attuned.
4 - The role and skills of the counsellor and ideas from psychotherapy
- Christine Evans
- Foreword by Peter Harper
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- Book:
- Genetic Counselling
- Published online:
- 12 August 2009
- Print publication:
- 09 March 2006, pp 61-82
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Summary
The role of the counsellor
In the genetic counselling world there is debate about the main role of the counsellor, some viewing it as providing information (Antley, 1979), whilst others emphasise the facilitation of decision-making (Hsai, 1979). Shiloh (1996) comments that in reality, willingly or not, most counsellors become decision-making counsellors. Soldan et al. (2000) are of a similar mindset and consider that in predictive testing the main aims of the interview are to assist in decision-making and to help in the preparation for a result. They differentiate between the role sometimes demanded by the system of assessing the suitability for testing and the patient-focused role of assisting in their decision-making. Horowitz et al. (2001) consider that there are two major tasks in genetic counselling: ‘shock mastery’, with the appraisal of the meaning of a test result and a review of the question, ‘Why me?’ The counsellor's role would be to facilitate the two tasks.
At first sight, the two roles of information-giver and facilitator appear to be at odds with one another. However in practice, the tension between the two roles and their different elements is not that great. The two elements may involve separate themes and processes but they are intimately linked and there is a natural follow-on process from the one to the other. The patient is given information and its meaning triggers an emotional response. If the counsellor is in tune with the patient the counsellor responsively changes from an information-giver to a facilitator.
2 - The psychological processes underlying genetic counselling
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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- 09 March 2006, pp 17-44
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Summary
The previous chapter clarified that although every genetic counselling consultation is unique, there is, nevertheless, a definite and general form to a consultation. This has evolved from clinical experience and is designed to help the individual address the issues involved. This thoughtful and measured approach applies to a single consultation, as much as it does to a series in predictive testing. The pace of genetic counselling protects the individual from rushing into testing recognising that there are implications to having personal genetic knowledge. This chapter explains how genetic counselling is a psychological challenge, which emanates from the interaction between the nature of genetics and the individual. There is a challenge which is innate in addressing genetic issues, but the individual perception is a key factor in determining whether the challenge is experienced as a stress. This in turn governs how the individual approaches and responds to genetic counselling.
Uncertainty and the effects of knowledge
Uncertainty is part of every day life experience, a normal anxiety about what might happen in the future. This is always the unknown territory of the imagination onto which the individual projects long-standing personal ideas and attitudes. When there is a genetically determined illness in a family, this existential anxiety may become exacerbated and the fear then becomes focused on the unpredictable genetic element of the illness. Some people will project their good luck and certainty that they are free from the genetic change, or that they will not be affected by illness.
Acknowledgements
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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Preface
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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Summary
The practice of medicine has a long tradition of making a diagnosis by building up a composite picture of the symptoms and their history, a clinical examination and specialist investigations. A diagnosis enables the course of the disease to be predicted and the appropriate treatment used. However, scientific developments in genetics, by allowing us to detect specific abnormalities in chromosomes and in individual genes, are beginning to throw light on the mechanisms involved at a biochemical and molecular level. As a result the genetic and environmental factors involved in many disorders can be separated. This has heralded the birth of the practice of clinical medical genetics, a relatively new speciality in the wide and general field of medicine. With this development not only is there is a new understanding of diseases, but also an alteration in the way medicine is practised. The availability of newly discovered genetic knowledge, to all who want it, has necessitated a shift in the dynamic between the individual patient and the professional. The days have gone when the doctor was the benevolent patriarch knowing the secrets of diseases and administering to the patient, the grateful receiver. Today, people want to take personal responsibility for their health and are encouraged to do so. There is a general interest in understanding health matters and a common desire to know about medical matters and this is validated by the individual's right of access to personal information. The individual now has choice.
Foreword
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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Conversation and communication lie at the heart of genetic counselling. How well we are able to communicate will to a large extent determine how successful we are in providing answers to the questions and problems posed by those whom we see in genetic counselling practice. We hope and believe that we are already skilful in the processes involved but, at the same time, most of us recognise that we could do much better and can think of many occasions when we have been left with a sense of inadequacy, or even failure.
This book will be of great support to all involved in genetic counselling, giving both general and specific information that relates directly to its practice. The general themes explored will be especially helpful to those many people whose training has involved little theoretical knowledge of psychology and psychotherapy. By exploring this general background, notably attachment theory, in the specific context of genetic counselling, Christine Evans introduces the reader gently to the concepts involved. As a result, one comes to understand the fuller significance of factors that most of us have already intuitively recognised, but have not been able to name or relate to general principles. As she states in her preface, ‘It is a way of giving back to the world of genetics what actually belongs to it’.
6 - The gene and the family system
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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The counsellor frequently has a family group in the consultation, a nuclear family, an extended family or multigenerational. The counsellor's practice will be enhanced by an understanding of how ‘the group’ is a unit to be thought of as a whole, yet made up of interacting parts. This chapter presents the core features of systemic thinking and its application to genetic counselling. It integrates this way of thinking with that of the earlier chapters, in particular attachment theory, in order to provide a consistent theoretical base for working in genetic counselling.
The clinical practice of genetic counselling includes in its orbit the psychosocial context of the family history of relationships and looks at how individual members of a family interact together and mutually affect one another. It looks at the communication patterns of particular members of a family, their emotional links and how the story of the gene is spoken about in the family life cycle. This immediately introduces systemic thinking, yet with notable exceptions (Eunpu, 1997), it has not been widely used in genetic counselling. Indeed some counsellors are rather intimidated by systemic theory which can at times be complicated and philosophical in its discussions and seem far removed from the distressing problems experienced by families.
Contents
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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3 - Understanding individual difference in genetic counselling using attachment theory
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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- 09 March 2006, pp 45-60
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The last chapter clarified how individuals differ in their management of anxiety and grief and linked it to the perception of genetic counselling and whether it was seen as stressful or not. In addition, individuals were shown to differ in their coping responses and to fall broadly into one of three groups: mature, defensive and symptomatic. This is particularly relevant to the counsellor as it explains different approaches and responses to genetic counselling. There are however individual differences in a number of other areas which have relevance for genetic counselling. These differences relate to the way a genetic family story is told, the thinking behind decision-making and the nature and pattern of relationship with the counsellor. All these differences of individual behaviour can be understood by referring to the concepts contained in attachment theory. The theory provides a framework which explains how these differences have arisen and how they are played out in genetics. Armed with these concepts, the counsellor will be equipped to recognise different patterns of behaviour and relating and to connect them to underlying attachment patterns. The counsellor can then adjust their personal response correspondingly so enhancing the professional relationship.
Attachment theory
Attachment theory is an up-to-date approach now being adopted and integrated into the different theoretical bases and thinking of the various schools of psychotherapy. It was conceived in the post-Freudian era and, in recent times, there has been a resurgence of interest from researchers, psychiatrists, psychotherapists and counsellors.
1 - An overview of genetic counselling
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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It is tempting to begin this book about the psychological aspects of the speciality of medical genetics by focusing on the individuals and families concerned and to explore the effect or the personal meaning of having a genetic consultation. However, good medical training and, in particular, training in psychological principles begin with a wider view. It uses a wide-angled lens, rather than a more detailed focus, to explore and define genetic counselling. This means beginning by addressing how genetic counselling has developed into its present shape and looking at the context of its evolution. This sets the scene which is the context of the question of the nature of genetic counselling and how is it defined. This can be followed by looking at the range of the speciality and the motivation for seeking genetic counselling. With that back-drop, it is then possible to analyse the component parts of a typical genetic counselling encounter, discuss the function of the interview and ask why it takes its present form.
The context
Genetic counselling has evolved in the context of three different areas: advances in medical knowledge, changes in society and the basic human desire to have knowledge, to understand and to learn.
Advances in medicine and the study of diseases have progressed by refinements in clinical diagnosis and special investigations. The richness of knowledge about the factors involved in the development of diseases has necessitated divisions into specialities, which all come under the umbrella of medicine.
5 - Examples of the role and skills of the counsellor
- Christine Evans
- Foreword by Peter Harper
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- Genetic Counselling
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- 09 March 2006, pp 83-94
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In the first half of this book a framework has been presented which enables the genetic counsellor to think about genetic counselling in terms of stress theory, coping and the use of defences. It has also used attachment theory and ideas from psychotherapy to guide the counsellor'sunderstanding of the patient, the interview process and the appropriate therapeutic response. This chapter presents clinical examples to focus in more detail on extracts from clinical practice to give the reader a better feel for integrating these theoretical points.
Working with anxiety and grief
The next three examples demonstrate the importance of containing anxiety and processing grief to facilitate a different way of thinking as explained in the discussion of empathy and, in particular, Bion's work on facilitating thinking.
Working with anxiety and a changing state of mind
It is very common in genetic counselling for a patient to enter the consulting room in a highly charged emotional state and, as explained, that interferes with the ability to take in the whole picture and consider the issues comprehensively. Frequently, there will be a sense of urgency and agitation about a person whose mind cannot be still enough to process the complexities arising. As the woman in this example explains, successful genetic counselling creates a space for the patient to listen and take in information, express any relevant upset and be able to settle down to consider the issue in hand.