Health Care Ethics in Vulnerable Populations: Clinical Research through the Patient's Eyes
Chronic conditions carry with them strong emotions
and often lead to charged relationships between patients and their
health providers and, by extension, patients and health researchers.
Persons are both autonomous and relational and a purely cognitive
model of autonomy neglects the social and relational basis of chronic
illness. Ensuring genuine informed consent in research requires a
thorough understanding of how participants perceive a study and
their reasons for participation. Surveys may not capture the
complexities of reasoning that underlies study participation.
Contradictory reasons for participation, for instance an initial claim
of altruism as rationale and a subsequent claim of personal benefit
(therapeutic misconception), affect the quality of informed consent.
Individuals apply principles through the filter of personal values and
lived experience. Authentic autonomy, and hence authentic consent
to research, occurs within the context of patients- unique life
narratives and illness experiences.
[1] 59th World Medical Association General Assembly: Declaration of
Helsinki: Ethical principles for medical research involving human
subjects. Seoul, Korea; 2008.
[2] Mitchell CB: Human dignity and biomedicine. Ethics & Medicine 2011,
27(1):5-6.
[3] Beauchamp TL, Childress JF: Principles of Biomedical Ethics. 5th
edition. Oxford, UK: Oxford University Press; 2001.
[4] U.S. Department of Health and Human Services: Federal policy for the
protection of human subjects ('Common Rule'). 2012.
[5] Kreuter MW, Lukwago SN, Bucholtz DC, Clark EM, Sanders-
Thompson V: Achieving Cultural Appropriateness in Health Promotion
Programs: Targeted and Tailored Approaches. Health Education &
Behavior 2003, 30(2):133-146.
[6] Agency for Healthcare Research and Quality (AHRQ): The wrong shot:
Error disclosure. 2011.
[7] Scanlan C, Kerridge IH: Autonomy and chronic illness: Not two
components but many. The American Journal of Bioethics 2009,
9(2):40-42.
[8] Kearns AJ, O-Mathuna DP, Scott PA: Diagnostic self-testing:
Autonomous choices and relational responsibilities. Bioethics 2010,
24(4):199-207.
[9] Mouradian WE: Deficits versus strengths: ethics and implications for
clinical practice and research. Cleft Palate-Craniofacial Journal 2001,
38(3):255-259.
[10] Wasan AJ, Taubenberger SP, Robinson WM: Reasons for Participation
in Pain Research: Can they Indicate a lack of Informed Consent? Pain
Medicine 2009, 10(1):111-119.
[11] Croskerry P: Clinical cognition and diagnostic error: applications of a
dual process model of reasoning. Advances in Health Sciences
Education 2009, 14(0):27-35.
[12] Reigeluth CM, Carr-Chellman AA: Understanding instructional theory.
In Instructional-design theories and models, Volume III: Building a
common knowledge base. Edited by Reigeluth CM, Carr-Chellman AA.
New York, NY: Routledge; 2009:3-26.
[13] Rest JR, Narvaez D, Bebeau MJ, Thoma SJ: A neo-Kohlbergian
approach: The DIT and schema theory. Educational Psychology Review
1999, 11(4):291-324.
[14] Rest JR, Thoma SJ, Edwards L: Designing and validating a measure of
moral judgment: State preferene and stage consistency approaches.
Journal of Educational Psychology 1997, 89(1):5-28.
[15] Rest JR, Narvaez D, Thoma SJ: DIT2: Devising and testing a revised
instrument of moral judgment. Journal of Educational Psychology
1999, 91(4):644-659.
[16] Bebeau MJ, Pimple KD, Muskavitch KMT, Borden SL, Smith DH:
Moral reasoning in scientific research: Cases for teaching and
assessment. Bloomington, IN: Poynter Center for the Study of Ethics
and American Institutions; 1995.
[17] Ross LF, Loup A, Nelson RM, Botkin JR, Kost R, George R. Smith J:
Nine key functions for a human subjects protection program for
community-engaged research: Points to consider. Journal of Empirical
Research on Human Research Ethics 2010:33-47.
[18] Hofstede G: Culture. 2012.
[19] Hofstede G: VSM 0: Values survey module 2008 questionnaire. 2008.
[20] Narvaez D, Getz I, Rest JR, Thoma SJ: Indicidual moral judgment and
cultural ideologies. Developmental Psychology 1999, 35(2):478-488.
[21] Snedecor GW, Cochran WG (Eds.): SStatistical methods (8th ed.).
Ames, IA: Iowa State University Press; 1989.
[22] Hosmer DW, Lemeshow S: Applied logistic regression. New York, NY:
John Wiley & Sons, Inc.; 2000.
[23] Gans KM, Risica PM, Strolla LO, Fournier L, Kirtania U, Upegui D,
Zhao J, George T, Acharyya S: Effectiveness of different methods for
delivering tailored nutrition education to low income, ethnically diverse
adults. International Journal of Behavioral Nutrition and Physical
Activity 2009, 6(24).
[24] Kroeze W, A. W, Brug J: A systematic review of randomized trials on
the effectiveness of computer-tailored education on physical activity and
dietary behaviors. Annals of Behavioral Medicine 2006, 31(3):205-223.
[25] Neville LM, O'Hara B, Milat AJ: Computer-tailored dietary behaviour
change interventions: a systematic review. Health Education Research
2009, 24(4):699-720.
[26] Neville LM, O'Hara B, Milat AJ: Computer-tailored physical activity
behavior change interventions targeting adults: A systematic review. Int
J Behav Nutr Phys Act 2009, 3(6):30.
[1] 59th World Medical Association General Assembly: Declaration of
Helsinki: Ethical principles for medical research involving human
subjects. Seoul, Korea; 2008.
[2] Mitchell CB: Human dignity and biomedicine. Ethics & Medicine 2011,
27(1):5-6.
[3] Beauchamp TL, Childress JF: Principles of Biomedical Ethics. 5th
edition. Oxford, UK: Oxford University Press; 2001.
[4] U.S. Department of Health and Human Services: Federal policy for the
protection of human subjects ('Common Rule'). 2012.
[5] Kreuter MW, Lukwago SN, Bucholtz DC, Clark EM, Sanders-
Thompson V: Achieving Cultural Appropriateness in Health Promotion
Programs: Targeted and Tailored Approaches. Health Education &
Behavior 2003, 30(2):133-146.
[6] Agency for Healthcare Research and Quality (AHRQ): The wrong shot:
Error disclosure. 2011.
[7] Scanlan C, Kerridge IH: Autonomy and chronic illness: Not two
components but many. The American Journal of Bioethics 2009,
9(2):40-42.
[8] Kearns AJ, O-Mathuna DP, Scott PA: Diagnostic self-testing:
Autonomous choices and relational responsibilities. Bioethics 2010,
24(4):199-207.
[9] Mouradian WE: Deficits versus strengths: ethics and implications for
clinical practice and research. Cleft Palate-Craniofacial Journal 2001,
38(3):255-259.
[10] Wasan AJ, Taubenberger SP, Robinson WM: Reasons for Participation
in Pain Research: Can they Indicate a lack of Informed Consent? Pain
Medicine 2009, 10(1):111-119.
[11] Croskerry P: Clinical cognition and diagnostic error: applications of a
dual process model of reasoning. Advances in Health Sciences
Education 2009, 14(0):27-35.
[12] Reigeluth CM, Carr-Chellman AA: Understanding instructional theory.
In Instructional-design theories and models, Volume III: Building a
common knowledge base. Edited by Reigeluth CM, Carr-Chellman AA.
New York, NY: Routledge; 2009:3-26.
[13] Rest JR, Narvaez D, Bebeau MJ, Thoma SJ: A neo-Kohlbergian
approach: The DIT and schema theory. Educational Psychology Review
1999, 11(4):291-324.
[14] Rest JR, Thoma SJ, Edwards L: Designing and validating a measure of
moral judgment: State preferene and stage consistency approaches.
Journal of Educational Psychology 1997, 89(1):5-28.
[15] Rest JR, Narvaez D, Thoma SJ: DIT2: Devising and testing a revised
instrument of moral judgment. Journal of Educational Psychology
1999, 91(4):644-659.
[16] Bebeau MJ, Pimple KD, Muskavitch KMT, Borden SL, Smith DH:
Moral reasoning in scientific research: Cases for teaching and
assessment. Bloomington, IN: Poynter Center for the Study of Ethics
and American Institutions; 1995.
[17] Ross LF, Loup A, Nelson RM, Botkin JR, Kost R, George R. Smith J:
Nine key functions for a human subjects protection program for
community-engaged research: Points to consider. Journal of Empirical
Research on Human Research Ethics 2010:33-47.
[18] Hofstede G: Culture. 2012.
[19] Hofstede G: VSM 0: Values survey module 2008 questionnaire. 2008.
[20] Narvaez D, Getz I, Rest JR, Thoma SJ: Indicidual moral judgment and
cultural ideologies. Developmental Psychology 1999, 35(2):478-488.
[21] Snedecor GW, Cochran WG (Eds.): SStatistical methods (8th ed.).
Ames, IA: Iowa State University Press; 1989.
[22] Hosmer DW, Lemeshow S: Applied logistic regression. New York, NY:
John Wiley & Sons, Inc.; 2000.
[23] Gans KM, Risica PM, Strolla LO, Fournier L, Kirtania U, Upegui D,
Zhao J, George T, Acharyya S: Effectiveness of different methods for
delivering tailored nutrition education to low income, ethnically diverse
adults. International Journal of Behavioral Nutrition and Physical
Activity 2009, 6(24).
[24] Kroeze W, A. W, Brug J: A systematic review of randomized trials on
the effectiveness of computer-tailored education on physical activity and
dietary behaviors. Annals of Behavioral Medicine 2006, 31(3):205-223.
[25] Neville LM, O'Hara B, Milat AJ: Computer-tailored dietary behaviour
change interventions: a systematic review. Health Education Research
2009, 24(4):699-720.
[26] Neville LM, O'Hara B, Milat AJ: Computer-tailored physical activity
behavior change interventions targeting adults: A systematic review. Int
J Behav Nutr Phys Act 2009, 3(6):30.
@article{"International Journal of Business, Human and Social Sciences:56253", author = "Alexander V. Libin and Manon Schladen and Assya Pascalev and Nawar Shara and Miriam Philmon and Yuri Millo and Joseph Verbalis", title = "Health Care Ethics in Vulnerable Populations: Clinical Research through the Patient's Eyes", abstract = "Chronic conditions carry with them strong emotions
and often lead to charged relationships between patients and their
health providers and, by extension, patients and health researchers.
Persons are both autonomous and relational and a purely cognitive
model of autonomy neglects the social and relational basis of chronic
illness. Ensuring genuine informed consent in research requires a
thorough understanding of how participants perceive a study and
their reasons for participation. Surveys may not capture the
complexities of reasoning that underlies study participation.
Contradictory reasons for participation, for instance an initial claim
of altruism as rationale and a subsequent claim of personal benefit
(therapeutic misconception), affect the quality of informed consent.
Individuals apply principles through the filter of personal values and
lived experience. Authentic autonomy, and hence authentic consent
to research, occurs within the context of patients- unique life
narratives and illness experiences.", keywords = "ethical dilemmas, open source technology, patient
education, psychology of decision making", volume = "6", number = "6", pages = "1295-4", }
