Reporting and referring research participants: Ethical challenges for investigators studying children and youth
Ethics and Behavior 4 (2):87 – 95 (1994)
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)|
|Categories||categorize this paper)|
References found in this work BETA
Groundwork of the Metaphysics of Morals.Kant Immanuel - 1785 - In Elizabeth Schmidt Radcliffe, Richard McCarty, Fritz Allhoff & Anand Vaidya (eds.), Late Modern Philosophy: Essential Readings with Commentary. Blackwell.
Citations of this work BETA
Ethical Issues in Researching Black Teenage Mothers with Harmful Childhood Histories: Marginal Voices.Claudia Bernard - 2013 - Ethics and Social Welfare 7 (1):54-73.
The Moral and Legal Need to Disclose Despite a Certificate of Confidentiality.Erin Talati Paquette & Lainie Friedman Ross - 2014 - American Journal of Bioethics 14 (10):51-53.
Similar books and articles
A Goodness-of-Fit Approach to Informed Consent for Pediatric Intervention Research.Jessica Masty & Celia Fisher - 2008 - Ethics and Behavior 18 (2 & 3):139 – 160.
Reconsidering the Value of Consent in Biobank Research.Judy Allen & Beverley Mcnamara - 2011 - Bioethics 25 (3):155-166.
The Principle of Caveat Emptor: Confidentiality and Informed Consent as Endemic Ethical Dilemmas in Focus Group Research. [REVIEW]Martin Tolich - 2009 - Journal of Bioethical Inquiry 6 (1):99-108.
Ethical and Regulatory Aspects of Clinical Research: Readings and Commentary.Ezekiel J. Emanuel (ed.) - 2003 - Johns Hopkins University Press.
Ethical Issues in Reporting and Referring in Research with Low-Income Minority Children.Diane Scott-Jones - 1994 - Ethics and Behavior 4 (2):97 – 108.
Ethical Problems in Research on Risky Behaviors and Risky Populations.Sandra Scarr - 1994 - Ethics and Behavior 4 (2):147 – 155.
The Ethics of Conducting Community-Engaged Homelessness Research.Vivien Runnels, Elizabeth Hay, Elyse Sevigny & Paddi O’Hara - 2009 - Journal of Academic Ethics 7 (1-2):57-68.
What Should Research Participants Understand to Understand They Are Participants in Research?David Wendler & Christine Grady - 2008 - Bioethics 22 (4):203–208.
Added to index2009-01-28
Total downloads19 ( #259,805 of 2,171,802 )
Recent downloads (6 months)1 ( #326,702 of 2,171,802 )
How can I increase my downloads?