Abstract
Over and beyond the general ethical principles with which all psychologists should be thoroughly familiar (American Psychological Assoication, 1992; Canter, Bennett, Jones, & Nagy, 1994), research with pediatric and clinical child populations raises special ethical problems that challenge investigators to develop special strategies in order to conduct their research in a responsible manner. The work described in this chapter, which is based on research experiences in hospital, school, and clinic settings, describes a number of knotty ethical problems that have not been well articulated in previous work. These issues include considerations in working with groups that are charged with the oversight of research ethics in clinical settings, problems related to confidentiality of data, obtaining appropriate consent, managing risk-related to psychological vulnerability, for example, depression in adolescents, and maintaining appropriate role boundaries as researchers in clinical settings. Using illustrations from research with varied populations of children and families, we describe a number of ethical issues that have arisen in data collection in clinical settings and consider strategies to manage them. Our aim is to help researchers to anticipate and prevent ethical problems wherever possible and to provide suggestions concerning how their impact on families can be minimized.
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References
Abramovitch, R., Freedman, J. L., Henry, K. L., & VanBrunschot, M. (1995). Children’s capacity to agree to psychological research: Knowledge of risks and benefits and voluntariness. Ethics and Behavior, 5, 25–48.
American Psychological Association. (1992). Ethical principles of psychologists and code of conduct. American Psychologist, 47, 1597–1611.
Appelbaum, P., & Roth, L. H. (1982). Competency to consent to research: A psychiatric overview. Archives of General Psychiatry, 39, 951–958.
Brinkman, D., Overholser, J., & Klier, D. (1994). Emotional distress in adolescent psychiatric inpatients: Direct and indirect measures. Journal of Personality Assessment, 62, 472–484.
Brinkman-Sull, D., Overholser, J., & Silverman, E. (1997). Risk of future suicide attempts in adolescent psychiatric inpatients at 18-month follow-up. Cleveland, OH: Case Western Reserve University.
Brooks-Gunn, J., & Rotheram-Borus, M. (1994). Rights to privacy in research: Adolescents versus parents. Ethics & Behavior, 4, 109–121.
Burbach, D. J., Farha, J. G., & Thorpe, J. S. (1986). Assessing depression in community samples of children using self-report inventories: Ethical considerations. Journal of Abnormal Child Psychology, 14, 579–589.
Busseil, D. A. (1994). Ethical issues in observational family research. Family Process, 33, 361–376.
Canter, M. B., Bennett, B. E. Jones, S. E., & Nagy, T. F. (1994). Ethics for psychologists: A commentary on the APA ethics code. Washington, DC: American Psychological Association.
Ceci, S. J., Peters, D., & Plotkin, J. (1985). Human Subjects Review, personal values, and the regulation of social science research. American Psychologist, 40, 994–1002.
Dekraii, M. B., & Sales, B. D. (1991). Liability in child therapy and research. Journal of Consulting and Clinical Psychology, 59, 853–860.
Department of Health and Human Services. (1983, March 8). Protection of human subjects (Code of Federal Regulations, 45 CPR 46). Washington, DC: Author.
Drotar, D. (1989). Psychological research in pediatric settings: Lessons from the field. Journal of Pediatric Psychology, 14, 63–74.
Drotar, D. & Ievers, C. (1994). Preliminary report: Age differences in parent-child responsibilities for management of cystic fibrosis and insulin-dependent diabetes mellitus. Journal of Developmental and Behavioral Pediatrics, 15, 367–374.
Drotar, D. & Robinson, J. (1998). Researching failure to thrive: Progress, problems, and recommendations. In D. Kessler & P. Dawson (Eds.) Pediatric undernutrition and failure to thrive: A transdisciplinary approach (pp. 74–92). Baltimore: Paul H. Brookes.
Fisher, C. B. (1993). Integrating science and ethics in research with high-risk children and youth. Social Policy Report. Society for Research in Clinical Development, 7, 1–23.
Fisher, C. B. (1994). Reporting and referring research participants: Ethical challenges for investigators studying children and youth. Ethics and Behavior, 4, 87–95.
Fisher, C. B. (1998, August). Discussion: Ethics code revision. Task Force discussion with ethical comments. Presented at annual meeting of the American Psychological Association, San Francisco, CA.
Freiheit, S., Overholser, J. C, & Brinkman-Sull, D. (1996). Utility of the Minnesota Multiphasic Personality Inventory personality disorder scales with adolescent psychiatric inpatients. Journal of Youth and Adolescence, 25, 803–815.
Freiheit, S., Overholser, J. C, & Lehnert, K. (1998). Sense of humor and adolescent depression. Journal of Adolescent Research, 13, 32–48.
Glantz, L. (1996). Conducting research with children: Legal and ethical issues. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 1283–1291.
Grodin, M. A., & Glantz, C. H. (1994) (Eds.). Children as research subjects. New York: Oxford University Press.
Gray, B. H. (1977). The functions of Human Subjects Review Committees. American Journal of Psychiatry, 134, 907–910.
Harth, S. C. & Thong, Y. H. (1995). Parental perceptions and attitudes about informed consent in clinical research concerning children. Social Science and Medicine, 40, 1573–1577.
Hoagwood, K. (1994). The certificate of confidentiality at the National Institutes of Mental Health. Discretionary considerations and its applicability in research on child and adolescent mental disorders. Ethics and Behavior, 4, 123–131.
Hoagwood, K., Jensen, P. S., & Fisher, C. B. (1996). Ethical issues in mental health research with children and adolescents. Mahwah, NJ: Laurence Erlbaum.
Jonsen, A. R. (1978). Research involving children: Recommendations of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Pediatrics, 62, 131–136.
Keith-Spiegel, P., & Koocher, G. P. (1990). Children, ethics and the law. Lincoln: University of Nebraska Press.
Koocher, G.P., & Keith-Spiegel, P. (1998). Ethics in psychology. Professional standards and cases. New York: Oxford University Press.
La Greca, A. M. (1990). Through the eyes of the child. Obtaining self-reports from children and adolescents. Needham Heights, MD: Allyn & Bacon.
Liss, M. B. (1994). Child abuse: Is there a mandate for researchers to report? Ethics and Behavior, 4, 133–146.
Lowe, C. U., Alexander, D., & Mishkin, B. (1974). Nontherapeutic research on children: An ethical dilemma. Journal of Pediatrics, 84, 468–472.
Melton, G. B., Koocher, G. P., & Saks, M. J. (1983). Children’s competence to consent. New York: Plenum Press.
Messick, S. (1980). Test validity and the ethics of assessment. American Psychologist, 35, 1012–1027.
Morrow, G. R. (1980). How readable are subject consent forms? Journal of the American Medical Association, 244, 56–58.
Nelson, S. H., & Grunebaum, H. (1972). Ethical issues in psychiatric follow-up studies. American Journal of Psychiatry, 128, 1358–1362.
Novick, M. R. (1981). Federal Guidelines and Professional Standards. American Psychologist, 36, 1035–1046.
Ogloff, J., & Otto, R. (1991). Are research participants truly informed? Readability of informed consent forms used in research. Ethics and Behavior, 1, 239–252.
Overholser, J. C., Adams, D., Lehnert, K., & Brinkman, D. (1995a). Self-esteem deficits and suicidal tendencies among adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 919–928.
Overholser, J. C., Brinkman, D., Lehnert, K., & Ricciardi, A. M. (1995b). Children’s Depression Rating Scale—Revised: Development of a short form. Journal of Clinical Child Psychology, 24, 443–452.
Phillips, D. F. (1996). Institutional review boards under stress: Will they explode or change? Journal of the American Medical Association, 276, 1623–1626.
Range, L. M., & Cotton, C. R. (1995). Reports of assent and remission in research with children: Illustrations and suggestions. Ethics and Behavior, 5, 1–13.
Robinson, J. F. (1998). Problem-solving abilities of mothers of infants with nonorganic failure to thrive. Unpublished Ph.D. dissertation, Case Western Reserve University, Cleveland, OH.
Roth, L. H., & Appelbaum, P. S. (1983). Obtaining informed consent for research with psychiatric patients. Psychiatric Clinics of North America, 6, 551–565.
Rotheram-Borus, M. J. & Koopman, C. (1994). Protecting children’s rights in ADS research. In B. Stanley, & J. Sieber, (Eds.), Social research on children and adolescents. Ethical Issues (pp. 143–161). Newbury Park, CA: Sage.
Ruccione, K., Krimer, R. T., & Moore, I. K. (1991). Informed consent for treatment of childhood cancer: Factors affecting parents’ decision making. Journal of Oncology Nursing, 813, 112–121.
Rutstein, D. D. (1969). The ethical design of human experiments. Daedalus, 98, 523–541.
Scarr, S. (1994). Ethical problems in research on risky behavior and risky populations. Ethics and Behavior, 4, 147–155.
Schwartz, C. E., Chesney, M. A., Irvine, M. J., & Keefe, F. J. (1997). Psychosomatic Medicine, 59, 362–371.
Schwitzgebel, R. K. (1978). Suggestions for the uses of psychological devices in accord with legal and ethical standards. Professional Psychology, 9, 478–488.
Scott-Jones, D. (1994). Ethical issues in reporting and referring in research with low-income minority children. Ethics and Behavior, 4 (2), 97–108.
Stanley, B., Sieber, J. E., & Melton, G. B. (1987). Empirical studies of ethical issues in research. A research agenda. American Psychologist, 42, 735–741.
Stanton, A., Burker, E., & Kershaw, D. (1991). Effects of researcher follow-up of distressed subjects: Tradeoff between validity and ethical responsibility? Ethics and Behavior, 1, 105–112.
Steiner, I. D. (1972). The evils of research. American Psychologist, 27, 766–768.
Stuart, R. B. (1978). Protection of the right to informed consent to participate in research. Behavior Therapy, 9, 73–82.
Thompson, R. A. (1990). Vulnerability in research. A developmental perspective on research. Child Development, 61, 1–16.
Weiner, I. B. (1989). On competence and ethicality in psychodiagnostic assessment. Journal of Personality Assessment, 53, 827–831.
Weithorn, C., & Campbell, S. B. (1982). The competency of children and adolescents to make informed treatment decisions. Child Development, 53, 1589–1598.
Weithorn, L. & Schearer, D. G. (1994). Children as research subjects. In M. A. Groden & C. H. Glantz (Eds.), (1994). Children as research subjects (pp. 100–125). New York: Oxford University Press.
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Drotar, D. et al. (2000). Ethical Issues in Conducting Research with Pediatric and Clinical Child Populations in Applied Settings. In: Drotar, D. (eds) Handbook of Research in Pediatric and Clinical Child Psychology. Issues in Clinical Child Psychology. Springer, Boston, MA. https://doi.org/10.1007/978-1-4615-4165-3_14
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DOI: https://doi.org/10.1007/978-1-4615-4165-3_14
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