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  Informed Consent

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Last Update:  June 24, 2017  
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General Reports
         
        Journal Papers, Abstracts, and Commentaries
 
 
Informed consent to HIV cure research.
Bromwich D, Millum JR.
J Med Ethics. 2016 Jun 10.
 Abstract

FULL-TEXT ARTICLE
Towards a standardised informed consent procedure for live donor nephrectomy: the PRINCE (Process of Informed Consent Evaluation) project-study protocol for a nationwide prospective cohort study.
Kortram K, Spoon EQ, Ismail SY, et al
BMJ Open. 2016 Apr 1;6(4):e010594.
 Paper

Self-Consent for HIV Prevention Research Involving Sexual and Gender Minority Youth: Reducing Barriers Through Evidence-Based Ethics.
 Fisher CB, Arbeit MR, Dumont MS, et al  
J Empir Res Hum Res Ethics. 2016 Mar 7.
 Abstract 

HIV and the right not to know.
Youngs J, Simmonds J. 
J Med Ethics. 2015 Nov 24.
 Abstract

FULL-TEXT ARTICLE
"If the patients decide not to tell what can we do?"- TB/HIV counsellors' dilemma on partner
notification for HIV.
 Njozing BN, Edin KE, Sebastián MS, Hurtig AK.
BMC Int Health Hum Rights. 2011 Jun 3;11:6.
 Paper

Consent and informational responsibility.
Pattinson SD. 
J Med Ethics. 2009 Mar;35(3):176-9.
 Abstract
 
Institutional mistrust in the organization of pharmaceutical clinical trials.
Fisher JA.
Med Health Care Philos. 2008 Jul 17.
 Abstract
 
Disclosure of HIV Status on Informed Consent Forms Presents an Ethical Dilemma for
Protection of Human Subjects.
Gray RH, Sewankambo NK, Wawer MJ, et al
J Acquir Immune Defic Syndr. 2006 Feb 1;41(2):246-248.
 Abstract
 
FULL-TEXT ARTICLE
Some limits of informed consent
O'Neill O
 J Med Ethics 2003;29:4-7
 Paper
 
A typology of shared decision making, informed consent, and simple consent.
Whitney SN, McGuire AL, McCullough LB.et al
Ann Intern Med. 2004 Jan 6;140(1):54-9.
 Abstract

FULL-TEXT ARTICLE
Modified informed consent procedure: consent to postponed information
Boter H, van Delden JJM, de Haan RJ,  Rinkel GJE  
BMJ 2003;327 284-285
 Paper

Autonomy, privacy and informed consent 2: postnatal perspective.
Scott P, Taylor A, Valimaki M, et al.
Br J Nurs 2003 Feb 12;12(2):117-127
 Abstract

Informed consent without bureaucracy.
Clarke S  
J Clin Neurosci 2003 Jan;10(1):35-6
 Abstract

FULL-TEXT ARTICLE
Are ethical principles relative to time and place? A Star Wars perspective on the
Alder Hey affair 
Arcus KD,  Kessel AS,
BMJ 2002;325:1493-1495
 Paper

Consent to open label extension studies: some ethical issues
Wainwright P.  
J Med Ethics 2002;28 373-376
 Abstract

Clinical issues on consent: some philosophical concerns
Worthington R  
J Med Ethics 2002;28 377-380
 Abstract

Knowledge and beliefs of nurse researchers about informed consent principles and regulations.
 Higgins PA, Daly BJ.
Nurs Ethics 2002 Nov;9(6):663-71
 Abstract

From informed to shared: the developing process of consent
Casari EF, Massimo LM.
Minerva Pediatr 2002 Jun;54(3):211-6
 Abstract  

  
Special Populations
 		      
 
Women
 
        Journal Papers, Abstracts, and Commentaries
 
  Improving Participant Understanding of Informed Consent in an HIV-Prevention Clinical Trial:
A Comparison of Methods.
Corneli AL, Sorenson JR, Bentley ME,  et al
AIDS Behav. 2011 Jun 9.
Abstract

Children

        Journal Papers, Abstracts, and Commentaries
 
 
Informed consent to perform the HIV diagnostic test: how to behave when minors are involved.
Prestileo T, Argo A, Triolo V, et al  
 Infez Med. 2009 Jan 1;16(4):200-203.
 Abstract
 
Should routine childhood immunizations be compulsory?
Isaacs D, Kilham H, Marshall H. 
J Paediatr Child Health. 2004 Jul;40(7):392-396.
 Abstract
 
Putting the 'informed' into 'consent': A matter of plain language.
Green J, Duncan R, Barnes G, Oberklaid F.  
J Paediatr Child Health. 2003 Dec;39(9):700-703.
 Abstract
   
  Factors influencing parental consent in pediatric clinical research.
 Rothmier JD, Lasley MV, Shapiro GG.
Pediatrics 2003 May;111(5 Pt 1):1037-41
 Abstract
   
  Consent for Emergency Medical Services for Children and Adolescents.
 Pediatrics 2003 Mar;111(3):703-706
 Abstract
 
Adolescents

        Journal Papers, Abstracts, and Commentaries
 
 
Adolescent Self-Consent for Biomedical Human Immunodeficiency Virus Prevention Research.
Gilbert AL, Knopf AS, Fortenberry JD ,et al
J Adolesc Health. 2015 Jul;57(1):113-119.
 Abstract

Comprehension of a simplified assent form in a vaccine trial for adolescents.
 Lee S, Kapogiannis BG, Flynn PM, et al
J Med Ethics. 2013 Jan 24.
 Abstract

State Adolescent Consent Laws and Implications for HIV Pre-Exposure Prophylaxis.
 Culp L, Caucci L.
Am J Prev Med. 2013 Jan;44(1 Suppl 2):S119-24.
Abstract

Informed consent to perform the HIV diagnostic test: how to behave when minors are involved.
Prestileo T, Argo A, Triolo V, et al  
 Infez Med. 2009 Jan 1;16(4):200-203.
 Abstract
 
Complexities in HIV Consent in Adolescents.
Ho WW, Brandfield J, Retkin R, Laraque D.
Clin Pediatr (Phila). 2005 Jul-Aug;44(6):473-8.
 Abstract

Third-party informed consent in research with adolescents: The good, the bad and the ugly.
Geluda K, Buarque Bisaglia J, Moreira V, et al   
Soc Sci Med. 2005 Sep;61(5):985-8.
 Abstract
 
Prisoners

        Journal Papers, Abstracts, and Commentaries
Coercion and informed consent in research involving prisoners.
Moser DJ, Arndt S, Kanz JE,et al.
Compr Psychiatry. 2004 Jan-Feb;45(1):1-0
 Abstract
 
Developmentally Disabled
 
        Journal Papers, Abstracts, and Commentaries
 
  The Capacity to Give Informed Consent in a Homeless Population with Developmental Disabilities.
Morton LG 2nd, Cunningham-Williams RM.
Community Ment Health J. 2009 Mar 5
 Abstract
 
Aborigines

        Journal Papers, Abstracts, and Commentaries
 
A pilot study of the quality of informed consent materials for Aboriginal participants
in clinical trials
Russell FM, Carapetis JR, Liddle H, et al  
J Med Ethics 2005;31 490-494
 Abstract
 
MSM       

        Journal Papers, Abstracts, and Commentaries
 
FULL-TEXT ARTICLE
Use of Videos Improves Informed Consent Comprehension in Web-Based Surveys Among Internet-Using Men Who Have Sex With Men: A Randomized Controlled Trial.
Hall EW, Sanchez TH, Stein AD, et al
J Med Internet Res. 2017 Mar 6;19(3):e64.
 Pape
HIV Testing/Vaccines
         

        Journal Papers, Abstracts, and Commentaries

 
The End of Written Informed Consent for HIV Testing: Not With a Bang but a Whimper
Bayer R, Philbin M, Remien RH.
 Am J Public Health. 2017 Jun 22:e1-e7
 Abstract

Theoretical model of critical issues in informed consent in HIV vaccine trials.
Lewis CA, Dewhurst S, McMahon JM, et al
AIDS Care. 2014 May 28:1-9
 Abstract

Unconsented HIV Testing in Cases of Occupational Exposure: Ethics, Law, and Policy.
Cowan E, Macklin R.
 Acad Emerg Med. 2012 Sep 20.
 Abstract

Simplifying Consent Increases HIV Testing and New Case Detection: The San
Francisco experience.
Zetola NM, Klausner JD, Katz MH.
Am J Public Health. 2009 Sep 17
 Abstract

HIV testing after needlestick injury: must the index patient be informed?
Wicker S, Gottschalk R, Spickhoff A, Rabenau HF.
Dtsch Med Wochenschr. 2008 Jul;133(28-29):1517-20 
Abstract
 
FULL TEXT ARTICLE
 Simplifying Consent for HIV Testing Is Associated with an Increase in HIV Testing and Case
Detection in Highest Risk Groups,San Francisco January 2003-June 2007.
Zetola NM, Grijalva CG, Gertler S, et al 
PLoS ONE. 2008 Jul 2;3(7):e2591.
 Paper
 
Prenatal HIV tests. Routine testing or informed choice?
 Guenter D, Kaczorowski J, Carroll J, Sellors J.
 Can Fam Physician. 2003 Oct;49:1334-40.
Abstract
End-of-Life Challenges
         
    Journal Papers, Abstracts, and Commentaries
 
  FULL-TEXT ARTICLE
Consent and end of life decisions.
 Harris J.
 J Med Ethics 2003 Feb;29(1):10-5
 Paper

The role of proxies in treatment decisions: evaluating functional capacity to consent
to end-of-life treatments within a family context.
Allen RS, Shuster JL Jr.
Behav Sci Law 2002;20(3):235-52
 Abstract

The illusion of patient choice in end-of-life decisions.
Sullivan MD.
Am J Geriatr Psychiatry 2002 Jul-Aug;10(4):365-72
 Abstract

Decisions at the end of life.
Balint JA.
Croat Med J 2000 Jun;41(2):144-9
 Abstract

  
Clinical  Research
         

        Journal Papers, Abstracts, and Commentaries
 
Are there adverse consequences of quizzing during informed consent for HIV research?
Sugarman J, Corneli A, Donnell Dr D., et al
J Med Ethics. 2011 Jun 8
 Abstract

FULL-TEXT PDF ARTICLE
Informed recruitment in partner studies of HIV transmission: an ethical issue in
couples research.
McNutt LA, Gordon EJ, Uuskula A.
 BMC Med Ethics. 2009 Aug 27;10(1):14
 Paper

Giving addicts their drug of choice: the problem of consent.
Walker T.
Bioethics. 2008 Jul;22(6):314-20.
 Abstract
 
A Model Designed to Enhance Informed Consent: Experiences From the HIV
Prevention Trials Network
Woodsong C,  Karim   DA  
Am J Public Health 2005;95 412-419
 Abstract
 
Interventions to improve research participants' understanding in informed consent for
research: a systematic review.
Flory J, Emanuel E. 
JAMA. 2004 Oct 6;292(13):1593-601.
 Abstract
 
Randomized, Controlled Evaluation of a Prototype Informed Consent Process for
HIV Vaccine Efficacy Trials.
 Coletti AS, Heagerty P, Sheon AR    
 Acquir Immune Defic Syndr 2003 Feb 1;32(2):161-9
 Abstract

Protecting research subjects under the waiver of informed consent for emergency
research: experiences with efforts to inform the community.
 Shah AN, Sugarman J.
Ann Emerg Med 2003 Jan;41(1):72-8
 Abstract

  
Mental Health Challenges
         
        Journal Papers, Abstracts, and Commentaries
 
 
Effects of Adding Ribavirin to Interferon to Treat Chronic Hepatitis C Infection: A Systematic
Review and Meta-analysis of Randomized Trials.
 Brok J, Gluud LL, Gluud C. 
Arch Intern Med. 2005 Oct 24;165(19):2206-12.
Abstract

Psychiatric research: what ethical concerns do LRECs encounter?A postal survey.
Osborn DP, Fulford KW.
J Med Ethics 2003 Feb;29(1):55-6
 Abstract

 Dementia and dignity: towards a new method of surrogate decision making.
Koppelman ER.
J Med Philos 2002 Feb;27(1):65-85
 Abstract

Capacity to Provide Informed Consent for Participation inSchizophrenia and
HIV Research.
 Moser DJ, Schultz SK, Arndt S, et al
 Am J Psychiatry 2002 Jul;159(7):1201-7
 Abstract
Autonomy, authenticity, or best interest: everyday decision-making and persons
with dementia.
Holm S.
Med Health Care Philos 2001;4(2):153-9
 Abstract

  
Reproductive Health Challenges
         
        Journal Papers, Abstracts, and Commentaries
 
 
Feminist ethics must inform practice: interventions with perinatal substance
users.
Marcellus L.
Health Care Women Int. 2004 Sep;25(8):730-42.
 Abstract

Legal issues affecting confidentiality and informed consent in reproductive
health.
Rockett LR.
J Am Med Womens Assoc 2000 Fall;55(5):257-60
Abstract

Abortion without free and informed consent? An Austrian case of
first impression.
Bernat E.
J Med Philos 2001 Jun;26(3):311-21
 Abstract

  
Critical Care Challenges
         

          Journal Papers, Abstracts, and Commentaries

  Recommendations for informed consent forms for critical care clinical trials.
Silverman HJ, Luce JM, Lanken PN,et al
Crit Care Med. 2005 Apr;33(4):867-82
 Abstract
Regional/National Challenges
         
Less-Developed Nations
       
          Journal Papers, Abstracts, and Commentaries
 
  Comprehension during informed consent in a less-developed country.
 Fitzgerald DW, Marotte C, Verdier RI, et al.
Lancet 2002 Oct 26;360(9342):1301-2
 Abstract		  

Australia       

          Journal Papers, Abstracts, and Commentaries

  A pilot study of the quality of informed consent materials for Aboriginal participants
in clinical trials
Russell FM, Carapetis JR, Liddle H, et al  
J Med Ethics 2005;31 490-494
 Abstract		  

Austria

          Journal Papers, Abstracts, and Commentaries

  Abortion without free and informed consent? An Austrian case of first impression.
Bernat E.
 J Med Philos 2001 Jun;26(3):311-21
 Abstract		  

Botswana

          Journal Papers, Abstracts, and Commentaries

  FULL-TEXT ARTICLE
 Repeated Assessments of Informed Consent Comprehension among HIV-Infected Participants of a
Three-Year Clinical Trial in Botswana.
Chaisson LH, Kass NE, Chengeta B,  et al
PLoS One. 2011;6(10):e22696.
 Paper		  

India

          Journal Papers, Abstracts, and Commentaries

 
FULL TEXT PDF ARTICLE
 Awareness, knowledge and attitude toward informed consent among doctors in two different
cultures in Asia: a cross-sectional comparative study in Malaysia and Kashmir, India.
Yousuf RM, Fauzi AR, How SH, et al
Singapore Med J. 2007 Jun;48(6):559-65.
 Paper

Community based trials and informed consent in rural north India.
DeCosta A, D'Souza N, Krishnan S, et al 
J Med Ethics. 2004 Jun;30(3):318-323.
 Abstract

Canada

          Journal Papers, Abstracts, and Commentaries

 
Prenatal HIV Testing: Women's Experiences of Informed Consent in Toronto, Ontario.
 Guenter D, Barbara AM, Shaul RZ, et al
J Obstet Gynaecol Can. 2008 Jan;30(1):17-22.
 Abstract

Knowledge of the legislation governing proxy consent to treatment and research.
 Bravo G, Pacaron;quet M, Dubois MF.
 J Med Ethics 2003 Feb;29(1):44-50
 Abstract
 

  
 
Malawi
 
          Journal Papers, Abstracts, and Commentaries
 
  Improving Participant Understanding of Informed Consent in an HIV-Prevention Clinical Trial:
A Comparison of Methods.[Malawi]
Corneli AL, Sorenson JR, Bentley ME, et al 
AIDS Behav. 2011 Jun 9
 Abstract

Malaysia

          Journal Papers, Abstracts, and Commentaries
  FULL TEXT PDF ARTICLE
 Awareness, knowledge and attitude toward informed consent among doctors in two different
cultures in Asia: a cross-sectional comparative study in Malaysia and Kashmir, India.
 Yousuf RM, Fauzi AR, How SH, et al
 Singapore Med J. 2007 Jun;48(6):559-65.
 Paper
 
South Africa
 
          Journal Papers, Abstracts, and Commentaries
 
  Culture and voluntary informed consent in African health care systems.
Frimpong-Mansoh A.
 Dev World Bioeth. 2008 Aug;8(2):104-14.
 Abstract
 
Swaziland
 
          Journal Papers, Abstracts, and Commentaries
 
  How Informed are Clients Who Consent? A Mixed-Method Evaluation of Comprehension Among Clients of Male Circumcision Services in Zambia and Swaziland.
Friedland BA, Apicella L, Schenk KD,  et al 
AIDS Behav. 2013 Feb 8
 Abstract
 

United States
 
          Journal Papers, Abstracts, and Commentaries
 
  Qualitative Study of Patient Consent for Health Information Exchange in an HIV Clinic.
Ramos SR, Bakken S.
Stud Health Technol Inform. 2014;201:418-24.
 Abstract

Minor consent and delivery of adolescent vaccines.
 Ford CA, Skiles MP, English A,  et al
J Adolesc Health. 2014 Feb;54(2):183-9.
 Abstract

Length and Complexity of US and International HIV Consent Forms from Federal HIV Network Trials.
Kass NE, Chaisson L, Taylor HA, Lohse J.
J Gen Intern Med. 2011 Jul 6
 Abstract

Elimination of requirement for prior signature consent and pre-and post-test counseling f
or HIV testing. Final rule.
Department of Veterans Affairs.
Fed Regist. 2009 Jul 16;74(135):34500
 Abstract

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Informed Consent