Reporting and referring research participants: Ethical challenges for investigators studying children and youth
Ethics and Behavior 4 (2):87 – 95 (1994)
|Abstract||Researchers studying at-risk and socially disenfranchised child and adolescent populations are facing ethical dilemmas not previously encountered in the laboratory or the clinic. One such set of ethical challenges involves whether to: (a) share with guardians research derived information regarding participant risk, (b) provide participants with service referrals, or (c) report to local authorities problems uncovered during the course of investigation. The articles assembled for this special section address the complex issues of deciding if, when, and how to report or provide referrals for research participants who are minors (referred to hereafter as minor research participants). This paper focuses on two factors underlying these decisions: the validity of risk estimates and meta-ethical positions on scientific responsibility. It is suggested that, before sharing information about minor research participants investigators should do the following: critically examine the diagnostic validity of developmental measures, include the scope and limitations of information sharing in informed consent procedures, and become familiar with state reporting laws. I discuss the impact of the traditionally accepted act utilitarian meta-ethical position on the investigator-participant relationship, and I recommend consideration of alternative positions as a step toward developing a research ethic of scientific responsibility and care.|
|Keywords||No keywords specified (fix it)|
|Through your library||Configure|
Similar books and articles
Jessica Masty & Celia Fisher (2008). A Goodness-of-Fit Approach to Informed Consent for Pediatric Intervention Research. Ethics and Behavior 18 (2 & 3):139 – 160.
Judy Allen & Beverley Mcnamara (2011). Reconsidering the Value of Consent in Biobank Research. Bioethics 25 (3):155-166.
Martin Tolich (2009). The Principle of Caveat Emptor: Confidentiality and Informed Consent as Endemic Ethical Dilemmas in Focus Group Research. Journal of Bioethical Inquiry 6 (1).
Ezekiel J. Emanuel (ed.) (2003). Ethical and Regulatory Aspects of Clinical Research: Readings and Commentary. Johns Hopkins University Press.
Diane Scott-Jones (1994). Ethical Issues in Reporting and Referring in Research with Low-Income Minority Children. Ethics and Behavior 4 (2):97 – 108.
Sandra Scarr (1994). Ethical Problems in Research on Risky Behaviors and Risky Populations. Ethics and Behavior 4 (2):147 – 155.
Joan E. Sieber (2004). Empirical Research on Research Ethics. Ethics and Behavior 14 (4):397 – 412.
Vivien Runnels, Elizabeth Hay, Elyse Sevigny & Paddi O.’Hara (forthcoming). The Ethics of Conducting Community-Engaged Homelessness Research. Journal of Academic Ethics.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
Added to index2009-01-28
Total downloads9 ( #114,124 of 549,124 )
Recent downloads (6 months)0
How can I increase my downloads?