Informed Consent Bibliography

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Appelbaum PS; Roth LH; Lidz CW; Benson P; Winslade W; False hopes and best data: consent to research and the therapeutic misconception. Hastings Center Report 1987; 17(2): 20-4. [Source: SOTA]
Beck JC; Staffin RD; Patients' Competency to Give Informed Consent to Medication. Hospital and Community Psychiatry 1986; 37(4): 400-402. [Source: Sugarman, J]
Bosk CL; Obtaining Voluntary Consent for Research in Desperately Ill Patients. Medical Care 2002; 40(9 Suppl): V 64-65. [Source: SOTA]
 
Braddock CH III; Fihn SD; Levinson W; et al.; How Doctors and Patients Discuss Routine Clinical Decisions: Informed Decision Making in the Outpatient Setting. Journal of General Internal Medicine 1997; 12(6): 339-45. [Source: Sugarman, J]
Brett AS; Rosenberg JC; The adequacy of informed consent for placement of gastrostomy tubes. Archives of Internal Medicine 2001; 161(5): 745-8. [Source: SOTA]
Brody BA; Making Informed Consent Meaningful. IRB: A Review of Human Subjects Research 2001; 23(5): 1-5. [Source: SOTA]
 
Chen DT; Miller FG; Rosenstein DL; Enrolling Decisionally Impaired Subjects in Clinical Research. Medical Care 2002; 40(9 Suppl): V 20-30. [Source: SOTA]
 
Cheng JD; Hitt J; Koczwara B; Schulman KA; Burnett CB; Gaskin DJ; Rowland JH; Meropol NJ; Impact of quality of life on patient expectations regarding phase I clinical trials. Journal of Clinical Oncology 2000; 18(2): 421-8. [Source: SOTA]
Dal-Re R; Elements of Informed Consent in Clinical Research with Drugs: A Survey of Spanish Clinical Investigators. Journal of Internal Medicine 1992; 231(4): 375-79. [Source: Sugarman, J]
Daugherty C; Lyman K; Minami H; et al.; A Feasibility Study of Informed Consent and Medical DecisionMaking: Employing an Interactive Patient Choice Design in Phase I Trials [Meeting Abstract]. 1996; 15(): A352-. [Source: Sugarman, J]
 
Daugherty C; Ratain MJ; Grochowski E; et al.; Perceptions of Cancer Patients and Their Physicians Involved in Phase I Trials. Journal of Clinical Oncology 1995; 13(5): 1062-72. [Source: Sugarman, J]
Daugherty CK; Impact of therapeutic research on informed consent and the ethics of clinical trials: a medical oncology perspective. Journal of Clinical Oncology 1999; 17(5): 1601-17. [Source: SOTA]
Daugherty CK; Informed consent, the cancer patient, and phase I clinical trials. Ethical Issues in Cancer Patient Care, Norwell, Mass., Kluwer Academic 1999; 102(): 77-89. [Source: SOTA]
Daugherty CK; Banik DM; Janish L; Ratain MJ; Quantitative analysis of ethical issues in phase I trials: a survey interview of 144 advanced cancer patients. IRB: A Review of Human Subjects Research 2000; 22(3): 6-14. [Source: SOTA]
Daugherty CK; Ratain MJ; Minami H; Banik DM; Vogelzang NJ; Stadler WM; Siegler M; Study of cohort-specific consent and patient control in phase I cancer trials. Journal of Clinical Oncology 1998; 16(7): 2305-12. [Source: SOTA]
Dawes PJ; O'Keefe DL; Adcock S; Informed Consent: Using a Structured Interview Changes Patients' Attitudes towards Informed Consent. Journal of Laryngology and Otology 1993; 107(9): 775-79. [Source: Sugarman, J]
Dermatis H; Lesko LM; Psychosocial Correlates of Physician-Patient Communication at Time of Informed Consent for Bone Marrow Transplantation. Cancer Investigation 1991; 9(6): 621-28. [Source: Sugarman, J]
Du Mont J; Stermac L; Research with Women Who Have Been Sexually Assaulted: Examining Informed Consent. Canadian Journal of Human Sexuality 1996; 5(3): 185-91. [Source: Sugarman, J]
 
Edwards SJ; Lilford RJ; Thornton J; Hewison J; Informed consent for clinical trials: in search of the 'best' method. Social Science and Medicine 1998; 47(11): 1825-40. [Source: SOTA]
Faden RR; Beauchamp TL; King NMP; A history and theory of informed consent. 1986; xv, 392 p-. [Source: SOTA]
 
Faden RR; Chwalow AJ; Holtzman NA; et al.; A Survey to Evaluate Parental Consent as Public Policy for Neonatal Screening. American Journal of Public Health 1982; 72(12): 1347-52. [Source: Sugarman, J]
Faden RR; Gielen AC; Kass N; et al.; Prenatal HIV-Antibody Testing and the Meaning of Consent. AIDS and Public Policy Journal 1994; 9(3): 151-59. [Source: Sugarman, J]
Fallowfield LJ; Hall A; Maguire GP; et al.; Psychological Outcomes of Different Treatment Policies in Women with Early Breast Cancer Outside a Clinical Trial. British Medical Journal 1990; 301(6752): 575-80. [Source: Sugarman, J]
Fost HC; A surrogate system for informed consent. JAMA 1975; 233(7): 800-3. [Source: SOTA]
Gallo C; Perrone F; Placido SD; et al.; Informed Versus Randomised Consent to Clinical Trials. Lancet 1995; 346(8982): 1060-64. [Source: Sugarman, J]
Gordon EJ; Daugherty CK; Referral and decision making among advanced cancer patients participating in Phase I trials at a single institution. Journal of Clinical Ethics 2001; 12(1): 31-8. [Source: SOTA]
Harth SC; Thong YH; Parental perceptions and attitudes about informed consent in clinical research involving children. Social Science and Medicine 1995; 40(11): 1573-7. [Source: SOTA]
Hattori H; Kiang SMSWP; et al.; The Patient's Right to Information in Japan-Legal Rules and Doctor's Opinions. Social Science and Medicine 1991; 32(9): 1007-1016. [Source: Sugarman, J]
Hewlett SE; Is Consent to Participate in Research Voluntary?. Arthritis Care and Research 1996; 9(5): 400-404. [Source: Sugarman, J]
Holmes-Rovner M; Wills CE; Improving Informed Consent: Insights from behavioral decision research. Medical Care 2002; 40(9 Suppl): V 30-39. [Source: SOTA]
 
Hutton JL; Ashcroft RE; Some popular versions of uninformed consent. Health Care Analysis 2000; 8(1): 41-53. [Source: SOTA]
Jablonski DF; Mosley GM; Byrd JC; et al.; Informed Consent for Patient Transfers to a Veterans Affairs Medical Center. Journal of General Internal Medicine 1991; 6(3): 229-32. [Source: Sugarman, J]
Jensen AB; Madsen B; Andersen P; et al.; Information for Cancer Patients Entering a Clinical Trial-An Evaluation of an Information Strategy. European Journal of Cancer 1993; 29A(16): 2235-38. [Source: Sugarman, J]
Jimison HB; Sher PP; Appleyard R; LeVernois Y; The use of multimedia in the informed consent process. Journal of the American Medical Informatics Association 1998; 5(3): 245-56. [Source: SOTA]
Joffe S; Cook EF; Cleary PD; Clark JW; Weeks JC; Quality of informed consent in cancer clinical trials: a cross-sectional survey. Lancet 2001; 358(9295): 1772-7. [Source: SOTA]
Kanerva AM; Suominen T; Leino-Kilpi H; Informed consent for short-stay surgery. Nursing Ethics 1999; 6(6): 483-93. [Source: SOTA]
Karlawish JHT; Fox E; Pearlman R; How Changes in Health Care Practices, Systems, and Research Challenge the Practice of Informed Consent.. Medical Care 2002; 40(9 Suppl): V 12-20. [Source: SOTA]
 
Kass NE; Sugarman J; Faden R; et al.; Trust: The Fragile Foundation of Contemporary Biomedical Research. Hastings Center Report 1996; 26(5): 25-29. [Source: Sugarman, J]
Kruse AY; Kjaergard LL; Krogsgaard K; Gluud C; Mortensen EL; Gottschau A; Bjerg AM; A randomized trial assessing the impact of written information on outpatients' knowledge about and attitude toward randomized clinical trials. The INFO trial group. Controlled Clinical Trials 2000; 21(3): 223-40. [Source: SOTA]
Kuczewski MG; Marshall P; The decision dynamics of clinical research: the context and process of informed consent. Medical Care 2002; 40(9 Suppl): V 45-55. [Source: SOTA]
 
Lavori PW; Sugarman J; Hays MT; Feussner JR; Improving informed consent in clinical trials: a duty to experiment. Controlled Clinical Trials 1999; 20(2): 187-93. [Source: SOTA]
Leino-Kilpi H; Nyrhinen T; Katajisto J; Patients' Rights in Laboratory Examinations: Do They Realize?. Nursing Ethics 1997; 4(6): 451-64. [Source: Sugarman, J]
Levi RB; Marsick R; Drotar D; Kodish ED; Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. Journal of pediatric hematology/oncology 2000; 22(1): 3-12. [Source: SOTA]
Linden M; Chaskel R; Information and Consent in Schizophrenic Patients in Long-term Treatment. Schizophrenia Bulletin 1981; 7(3): 372-78. [Source: Sugarman, J]
Marshall PA; Informed Consent in International Health Research: (1) Cultural Influences on Communication, (2) The Protection of Confidentiality. Biomedical research ethics: updating international guidelines : a consultation : Geneva, Switzerland, 15-17 March 2000, Geneva, CIOMS 2000; [Source: SOTA]
 
Marson DC; Ingram KK; Cody HA; et al.; Assessing the Competency of Patients with Alzheimer's Disease Under Different Legal Standards: A Prototype Instrument. Archives of Neurology 1995; 52(10): 949-54. [Source: Sugarman, J]
McCrady BS; Bux DA Jr.; Ethical issues in informed consent with substance abusers. Journal of consulting and clinical psychology 1999; 67(2): 186-93. [Source: SOTA]
Miller M; Phase I cancer trials: a crucible of competing priorities. International Anesthesiology Clinics 2001; 39(3): 13-33. [Source: SOTA]
Mohanna K; Tunna K; Withholding consent to participate in clinical trials: decisions of pregnant women. British journal of obstetrics and gynaecology 1999; 106(9): 892-7. [Source: SOTA]
Ockene IS; Miner J; Shannon TA; et al.; The Consent Process in the Thrombolysis in Myocardial Infarction (TIMI-Phase I) Trial. Clinical Research 1991; 39(1): 13-17. [Source: Sugarman, J]
O'Connor AM; Effects of framing and level of probability on patients' preferences for cancer chemotherapy. Journal of Clinical Epidemiology 1989; 42(2): 119-26. [Source: SOTA]
O'Flynn N; Spencer J; Jones R; Consent and Confidentiality in Teaching in General Practice: Survey of Patients' Views on Presence of Students. British Medical Journal 1997; 315(7116): 1142-. [Source: Sugarman, J]
Ondrusek N; Abramovitch R; Pencharz P; Koren G; Empirical examination of the ability of children to consent to clinical research. Journal of Medical Ethics 1998; 24(3): 158-65. [Source: SOTA]
Pokorny SB; Jason LA; Schoeny ME; Townsend SM; Curie CJ; Do participation rates change when active consent procedures replace passive consent. Evaluation review 2001; 25(5): 567-80. [Source: SOTA]
Preziosi MP; Yam A; Ndiaye M; Simaga A; Simondon F; Wassilak SG; Practical experiences in obtaining informed consent for a vaccine trial in rural Africa. New England Journal of Medicine 1997; 336(5): 370-3. [Source: SOTA]
Riecken HW; Ravich R; Informed Consent to Biomedical Research in Veterans Administration Hospitals. JAMA 1982; 248(): 344-48. [Source: Sugarman, J]
Schaeffer MH; Krantz DS; Wichman A; et al.; The Impact of Disease Severity on the Informed Consent Process in Clinical Research. American Journal of Medicine 1996; 100(3): 261-68. [Source: Sugarman, J]
Searight HR; Miller CK; Remembering and Interpreting Informed Consent: A Qualitative Study of Drug Trial Participants. Journal of the American Board of Family Practice 1996; 9(1): 14-22. [Source: Sugarman, J]
Searle J; Routine Antenatal Screening: Not a Case of Informed Choice. Australian and New Zealand journal of public health 1997; 21(3): 268-74. [Source: Sugarman, J]
 
Shafir MS; Silversides C; Waters I; et al.; Patient Consent to Observation: Responses to Requests for Written Consent in an Academic Family Practice Unit. Canadian Family Physician 1995; 41(): 1367-72. [Source: Sugarman, J]
Simes RJ; Tattersall MH; Coates AS; et al.; Randomised Comparison of Procedures for Obtaining Informed Consent in Clinical Trials of Treatment for Cancer. British Medical Journal 1986; 293(6554): 1065-68. [Source: Sugarman, J]
Siminoff LA; Fetting JH; Abeloff MD; Doctor-Patient Communication about Breast Cancer Adjuvant Therapy. Journal of Clinical Oncology 1990; 7(9): 1192-1200. [Source: Sugarman, J]
Sriram TGK; Kumar VK; Jayaprakash MR; et al.; Informed Consent: A Study of Experiences and Opinion of Utilizers of Health Services from India. Social Science and Medicine 1991; 32(12): 1389-92. [Source: Sugarman, J]
Sugarman J; Cain C; Wallace R; Welsh-Bohmer KA; How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society 2001; 49(8): 1110-9. [Source: SOTA]
Sugarman J; Kass NE; Goodman SN; Perentesis P; Fernandes P; Faden RR; What patients say about medical research. IRB: A Review of Human Subjects Research 1998; 20(4): 1-7. [Source: SOTA]
Sugarman J; Regan K; Parker B; Bluman LG; Schildkraut J; Ethical ramifications of alternative means of recruiting research participants from cancer registries. Cancer 1999; 86(4): 647-51. [Source: SOTA]
Sulmasy DP; Lehmann LS; Levine DM; et al.; Patients' Perceptions of the Quality of Informed Consent for Common Medical Procedures. Journal of Clinical Ethics 1994; 5(3): 189-94. [Source: Sugarman, J]
Tabak N; Decision Making in Consenting to Experimental Cancer Therapy. Cancer Nursing 1995; 18(2): 89-96. [Source: Sugarman, J]
Tindall B; Forde S; Ross MW; et al.; Effects of Two Formats of Informed Consent on Knowledge amongst Persons with Advanced HIV Disease in a Clinical Trial of Didanosine. Patient Education and Counseling 1994; 24(3): 261-66. [Source: Sugarman, J]
Tomamichel M; Jaime H; Degrate A; de Jong J; Pagani O; Cavalli F; Sessa C; Proposing phase I studies: patients', relatives', nurses' and specialists' perceptions. Annals of Oncology 2000; 11(3): 289-94. [Source: SOTA]
Ubel PA; Is Information Always a Good Thing? Helping Patients Make 'Good' Decisions. Medical Care 2002; 40(9 Suppl): V 39-45. [Source: SOTA]
 
van Stuijvenberg M; Suur MH; de Vos S; Tjiang GC; Steyerberg EW; Derksen-Lubsen G; Moll HA; Informed consent, parental awareness, and reasons for participating in a randomised controlled study. Archives of disease in childhood 1998; 79(2): 120-5. [Source: SOTA]
Verheggen FW; Nieman F; Jonkers R; Determinants of patient participation in clinical studies requiring informed consent: why patients enter a clinical trial. Patient Education and Counseling 1998; 35(2): 111-25. [Source: SOTA]
Verheggen FW; van Wijmen FC; Informed consent in clinical trials. Health Policy 1996; 36(2): 131-53. [Source: SOTA]
VΣlimΣki M; Leino-Kilpi H; Helenius H; Self-Determination in Clinical Practice: The Psychiatric Patient's Point of View. Nursing Ethics 1996; 3(4): 329-44. [Source: Sugarman, J]
Whalen ER; Informed Consent: The Opinions of Critical Care Nurses. Heart and Lung 1984; 13(6): 662-66. [Source: Sugarman, J]
White DR; Muss HB; Michielutte R; et al.; Informed Consent: Patient Information Forms in Chemotherapy Trials. American Journal of Clinical Oncology 1984; 7(2): 183-90. [Source: Sugarman, J]
Wirshing DA; Wirshing WC; Marder SR; Liberman RP; Mintz J; Informed consent: assessment of comprehension. American Journal of Psychiatry 1998; 155(11): 1508-11. [Source: SOTA]
Wolf AM; Schorling JB; Preferences of elderly men for prostate-specific antigen screening and the impact of informed consent. journals of gerontology Series A, Biological sciences and medical sciences 1998; 53(3): 195-200. [Source: SOTA]
Ziegler DK; Mosier MC; Buenaver M; Okuyemi K; How much information about adverse effects of medication do patients want from physicians?. Archives of Internal Medicine 2001; 161(5): 706-13. [Source: SOTA]
Zupancic JA; Gillie P; Streiner DL; Watts JL; Schmidt B; Determinants of parental authorization for involvement of newborn infants in clinical trials. Pediatrics 1997; 99(1): E6-. [Source: SOTA]