Cystic fibrosis: To screen or not to screen? Involving a Citizens' jury in decisions on screening carrier

Health Expectations

Volumn 18, Issue 6, 2015, Pages 1956-1967

  Mosconi, Paola ^a   Castellani, Carlo ^b   Villani, Walter ^a   Satolli, Roberto ^c  

^a MARIO NEGRI INSTITUTE FOR PHARMACOLOGICAL RESEARCH   (Italy)

^b UNIVERSITY HOSPITAL OF VERONA   (Italy)

^c Zadig Editoria Scientifica   (Italy)

Author keywords

Citizens' jury; Cystic fibrosis; Cystic fibrosis carrier screening

Indexed keywords

COMMUNITY PARTICIPATION; CYSTIC FIBROSIS; DECISION MAKING; GENETIC SCREENING; GENETICS; HEALTH CARE PLANNING; HUMAN; ITALY; MASS SCREENING; PROCEDURES; PUBLIC OPINION;

COMMUNITY PARTICIPATION; CYSTIC FIBROSIS; DECISION MAKING; GENETIC TESTING; HEALTH PRIORITIES; HUMANS; ITALY; MASS SCREENING; PUBLIC OPINION;

EID: 84954564927     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/hex.12261     Document Type: Article

References (31)

1. Southern KW, Munck A, Pollitt R et al. A survey of newborn screening for cystic fibrosis in Europe. Journal of Cystic Fibrosis, 2007; 6: 57-65.
2. Riordan JR, Rommens JM, Kerem B et al. Identification of the cystic fibrosis gene: cloning and characterization of complementary DNA. Science, 1989; 245: 1066-1073.
3. Genetic testing for cystic fibrosis. NIH Consensus Statement, 1997; 15: 1-37.
4. Gregg AR, Simpson JL. Genetic screening for cystic fibrosis. Obstetrics and Gynecology Clinics of North America, 2002; 29: 329-340.
5. Update on carrier screening for cystic fibrosis. ACOG Committee Opinion No. 486. Obstetrics and Gynecology, 2011; 117: 1028-1031.
6. Grody WW, Cutting G, Klinger K et al. Laboratory standards and guidelines for population-based cystic fibrosis carrier screening. Genetics in Medicine, 2001; 3: 149-154.
7. Castellani C, Macek M, Cassiman JJ et al. Benchmark for cystic fibrosis carrier screening: a European consensus document. Journal of Cystic Fibrosis, 2010; 9: 165-178.
8. Grody WW, Cutting GR, Watson MS. The cystic fibrosis mutation "arms race": when less is more. Genetics in Medicine, 2007; 9: 739-744.
9. McClaren BJ, Metcalfe SA, Amor DJ, Aitken M, Massie J. A case for cystic fibrosis carrier testing in the general population. Medical Journal of Australia, 2011; 194: 208-209.
10. Norman R, van Gool K, Hall J, Delatycki M, Massie J. Cost-effectiveness of carrier screening for cystic fibrosis in Australia. Journal of Cystic Fibrosis, 2012; 11: 281-287.
11. Castellani C, Picci L, Tamanini A, Girardi P, Rizzotti P, Assael BM. Association between carrier screening and incidence of cystic fibrosis. JAMA, 2009; 302: 2573-2579.
12. Janssens S, De Paepe A, Borry P. Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature. Journal of Community Genetics, 2014; 5: 13-29.
13. Radhakrishnan M, van Gool K, Hall J, Delatycki M, Massie J. Economic evaluation of cystic fibrosis screening: a review of the literature. Health Policy, 2008; 85: 133-147.
14. Glasziou P, Moynihan R, Richards T, Godlee F. Too much medicine too little care. BMJ, 2013; 347: f4247.
15. Moynihan R, Doran E, Henry D. Disease mongering is now part of the global health debate. PLoS Medicine, 2008; 5: e106.
16. Tikkinen KAO, Leinonen JS, Guyatt GH, Ebrahim S, Järvinen TLN. What is a disease? Perspectives of the public, health professionals, and legislators. BMJ Open, 2012; 2: e001632.
17. Domenighetti G, Vineis P, De Pietro C, Tomada A. Ability to pay and equity in access to Italian and British National Health Services. European Journal of Public Health, 2010; 20: 500-503.
18. Goodin RE, Dryzek JS. Deliberative impacts: the macro-political uptake of mini-publics. Politics & Society, 2006; 34: 219-244.
19. Lukensmeyer CJ, Hasselblad Torres L. Public deliberation: a manager's guide to citizen engagement, IBM Center for the Business of Government, 2006. Available at: http://www.whitehouse.gov/files/documents/ostp/opengov_inbox/ibmpubdelib.pdf, accessed 30 May 2014.
20. Department of Health. Choosing Health: Making Healthier Choices Easier. London: Department of Health, 2004 (UK Government White Paper).
21. King's Fund. Public Attitudes to Public Health Policy. London: King's Fund Publications, 2004.
22. Elwood P, Longley M. My health: whose responsibility? A jury decides. Journal of Epidemiology and Community Health, 2010; 64: 761-764.
23. Lenaghan J. Involving the public in rationing decisions. The experience of citizens juries. Health Policy, 1999; 49: 45-61.
24. The Jefferson Center. Citizens jury handbook, 2004. Available at: http://www.epfound.ge/files/citizens_jury_handbook.pdf, accessed 26 May 2014.
25. Paul C, Nicholls R, Priest P, McGee R. Making policy decisions about population screening for breast cancer: the role of citizens' deliberation. Health Policy, 2008; 85: 314-320.
26. Rychetnik L, Doust J, Thomas R, Gardiner R, Mackenzie G, Glasziou PA. Community Jury on PSA screening: what do well-informed men want the government to do about prostate cancer screening-a qualitative analysis. BMJ Open, 2014; 4: e004682.
27. Mosconi P, Colombo C, Satolli R, Liberati A. PartecipaSalute, an Italian project to involve lay people, patients' associations and scientific-medical representatives on the health debate. Health Expectations, 2007; 10: 194-204.
28. Kuper R. Citizens Juries: The Hertfordshire Experience, Working Paper, University of Hertfordshire Business School, UK, 1996.
29. Tinetti ME, Basch E. Patients' responsibility to participate in decision making and research. JAMA, 2013; 309: 2331-2332.
30. Richards T, Montori VM, Godlee F, Lapsley P. Let the patient revolution begin. BMJ, 2013; 346: f2614.
31. Moynihan R. The future of medicine lies in truly shared decision making. BMJ, 2013; 346: f2789.