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CASRC investigators confront many difficult ethical and human
subjects issues as part of conducting studies involving high-risk
populations. For example, studies of youth in out-of-home
care require special approaches to adult consent for youth
participation. A second difficult area is reconciling human
subjects confidentiality rights with mandated reporting laws.
CASRC investigators have developed effective approaches for
these problems in response to specific study demands, and
the Ethics component of the Methods and Statistics Group provides
the structure for systematic reflection about critical ethical
issues in mental health services research involving high-risk
populations.
Research
ethics review and consultation is provided for all CASRC projects
and encompasses:
1. Scientific, participant, and community risks and benefits
of specific methodologies proposed for CASRC studies;
2. Ethical impact of recruitment procedures such as the use
of incentives, the potential for social stigmatization, and
fair representation and access to research benefits;
3. Use of informed consent procedures that take into account
ethical principles, federal guidelines, participant expectations,
and personal moral agency;
4. Use of confidentiality and disclosure procedures that are
ethically responsible; and
5. Ethical approaches to randomized intervention studies and
use of alternative treatment control groups.
Regular
training and discourse concerning research ethical issues
are provided as part of a seminar series run by the Methods
and Statistics Group. Celia B. Fisher, Ph.D. provides training
and consultation through visits to the center and as needed
via telephone conference calls and e-mail. On site consultation
is also provided by Laura Dunn, M.D. and Barton Palmer, Ph.D.
on an as-needed basis. Drs. Fisher, Dunn, and Palmer are NIH
funded ethics researchers whose work focuses on ethical concerns
in mental health and medical settings. An annual ethics workshop
updates CASRC investigators on federal guidelines, and how
to apply a contextually sensitive decision making process
that considers ethical principles, federal guidelines, and
practical research implementation issues such as those described
above. This workshop curriculum is based on Drs. Fisher, Dunn,
and Palmer’s expertise in research ethics and in improving
the process of informed consent to optimize research participants’
abilities to provide valid consent for research, decision-making
capacity in patients with mental illness, and capacity to
consent for children, adolescents, and their families.
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2007
CASRC