A survey of the SWISS researchers on the impact of sibling privacy protections on pedigree recruitment

Neuroepidemiology

Volumn 25, Issue 1, 2005, Pages 32-41

  Worrall, Bradford B ^a,b   Chen, Donna T ^a,b   Brown Jr , Robert D ^c   Brott, Thomas G ^d   Meschia, James F ^d  

^a UNIVERSITY OF VIRGINIA   (United States)

^b UNIVERSITY OF VIRGINIA   (United States)

^c MAYO CLINIC   (United States)

^d MAYO CLINIC   (United States)

Author keywords

Ethics; Genetic research; Pedigree; Stroke

Indexed keywords

ARTICLE; ATTITUDE; CONTROLLED STUDY; HUMAN; PEDIGREE; PERCEPTION; PRIVACY; PROTECTION; SIBLING;

BIOMEDICAL AND BEHAVIORAL RESEARCH; EMPIRICAL APPROACH; GENETICS AND REPRODUCTION;

ATTITUDE OF HEALTH PERSONNEL; BRAIN ISCHEMIA; CANADA; CEREBROVASCULAR ACCIDENT; GENETIC PRIVACY; HUMANS; PATIENT SELECTION; PEDIGREE; RESEARCH PERSONNEL; SIBLINGS; UNITED STATES;

EID: 20844450928     PISSN: 02515350     EISSN: None     Source Type: Journal    
DOI: 10.1159/000085311     Document Type: Article

References (22)

1. Botkin J: Protecting the privacy of family members in survey and pedigree research. JAMA 2001;285:207-211.
2. Chen DT, Miller FG, Rosenstein DL: Ethical aspects of research into the etiology of autism. Ment Retard Dev Disabil Res Rev 2003;9:48-53.
3. Chen DT, Worrall BB, Meschia JF: Protecting the privacy of family members in research. JAMA 2001;285:1961-1963.
4. Cook-Deegan RM: Privacy, families, and human subject protections: Some lessons from pedigree research. J Contin Educ Health Prof 2001;21:224-237.
5. Worrall BB, Chen DT, Meschia JF: Ethical and methodological issues in pedigree stroke research. Stroke 2001;32:1242-1249.
6. Grady C: Ethical principles in clinical research; in Gallin JI (ed): Principles and Practice of Clinical Research. San Diego, Academic Press, 2002, pp 15-26.
7. Kahn JP, Mastroianni AC: Moving from compliance to conscience: Why we can and should improve on the ethics of clinical research. Arch Intern Med 2001;161:925-928.
8. Meschia JF, Brown RD Jr, Brott TG, Chukwudelunzu FE, Hardy J, Rich SS: The Siblings With Ischemic Stroke Study (SWISS) protocol. BMC Med Genet 2002;3:1.
9. Adams HP Jr, Bendixen BH, Kappelle LJ, Biller J, Love BB, Gordon DL, et al: Classification of subtype of acute ischemic stroke: Definitions for use in a multicenter clinical trial. TOAST. Trial of Org 10172 in Acute Stroke Treatment. Stroke 1993;24:35-41.
10. Chen DT, Worrall BB, Brown RD Jr, Brott TG, Kissela BM, Olson TS, et al, for the SWISS Study Investigators: The impact of privacy protections on recruitment in a multicenter stroke genetics study. Neurology (in press).
11. Lavori PW, Sugarman J, Hays MT, Feussner JR: Improving informed consent in clinical trials: A duty to experiment. Control Clin Trials 1999;20:187-193.
12. Sugarman J, Eckenwiler LA, Emanuel EJ: Research oversight through new lenses: The consortium to examine clinical research ethics. IRB 2003;25:9-10.
13. Meschia JF, Brott TG, Hardy J, Brown RD Jr, Dodick DW, Cornwell KB, forthe SWISS Pilot Investigators: Genome-wide screen for stroke: Pilot testing in the Siblings With Ischemic Stroke Study (SWISS). J Stroke Cerebrovasc Dis 2000:9:276-281.
14. Tyrer P, Seivewright H, Ferguson B, Johnson T: 'Cold calling' in psychiatric follow up studies: Is it justified? J Med Ethics 2003;29:238-242.
15. Sutherland HJ, Lacroix J, Knight J, Andrulis IL, Boyd NF: The Cooperative Familial Registry for Breast Cancer Studies: Design and first year recruitment rates in Ontario. J Clin Epidemiol 2001;54:93-98.
16. Kaye WH, Lilenfeld LR, Berrettini WH, Strober M, Devlin B, Klump KL, et al: A search for susceptibility loci for anorexia nervosa: Methods and sample description. Biol Psychiatry 2000;47:794-803.
17. Dillman DA (ed): Mail and Internet Surveys: The Tailored Design Method, ed 2. New York, Wiley, 2000.
18. Chen DT, Rosenstein DL, Muthappan P, Hilsenback SG, Miller FG, Emanuel EJ, Wendler D: Research with stored biological samples: What do research participants want? Arch Intern Med 2005;165:652-655.
19. Wendler D, Emanuel E: The debate over research on stored biological samples: What do sources think. Arch Intern Med 2002;162:1457-1462.
20. Silverman H, Hull SC, Sugarman J: Variability among institutional review boards' decisions within the context of a multicenter trial. Crit Care Med 2001;29:235-241.
21. Stair TO, Reed CR, Radeos MS, Koski G, Camargo CA, the MARC Investigators: Variation in institutional review board responses to a standard protocol for a multicenter clinical trial. Acad Emerg Med 2001;8:636-641.
22. McWilliams R, Hoover-Fong J, Hamosh A, Beck S, Beaty T, Cutting G: Problematic variation in local institutional review of a multi-center genetic epidemiology study. JAMA 2003;16:290:360-366.