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Compassionate research: Exploring answers to ethical questions

Naomi Goodman, MPH Candidate, New England Regional Spinal Cord Injury Center, Boston University Medical Center, 732 Harrison Ave., F511, Physical Medicine and Rehabilitation, Boston, MA 02118, (617) 638-7387, naomi.goodman@bmc.org

Learning about psychosocial wellbeing has become a significant part of public health research. Consent forms now explain to study subjects that they may experience psychological discomfort as a result of participation and that they will be referred on to the principal investigator in such cases. However, detailed provisions or protocols do not often exist on dealing with a distressed subject who is expressing thoughts of depression, self-harm, or suicidiality in the course of a research study; the interviewer who first deals with these subjects is often a student or a new public health professional and does not have background or training in these issues. This lack of protocol and experience do not provide a solid foundation from which to tackle important issues such as: the researcher's responsibility to a study participant in emotional crisis; deciding whether the subject is in need of immediate assistance; facilitating entry into the system without stepping out of the bounds of research into the role of clinician (a role which is not legal nor appropriate). Lastly, how does the researcher respond to the human rights issue of neglected and chronically underserved patients, who have no other or very limited access into the system? The presenter outlines an approach to compassionate research, which involves a clearer consent form, that specifies the services an interviewer will or will not provide; standardized protocols that include referral, assistance, and duty to report; training programs for interviewers asking sensitive questions; and debriefing and counseling for interviewers.

Learning Objectives:

Keywords: Research Ethics, Mental Health

Presenting author's disclosure statement:

Not Answered

Current Topics in Student Research Poster Session

The 134th Annual Meeting & Exposition (November 4-8, 2006) of APHA