Ethical Considerations in Conducting Research with GLBT Adolescents:

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• Ethical Considerations in Conducting Research
  with GLBT Adolescents
• Setting an Agenda for Ethically Responsible
  Research Practices
• Diane E. Elze, Ph.D.
• delze_at_wustl.edu

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Overview

• Ethical challenges
• Current practices
• Setting a research agenda

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Fundamental Ethical Principles Guiding Research

• Respect
• Beneficence
• Justice

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Current Concerns

• Perceive youth-focused research as too difficult.
• Anticipate difficulties securing IRB approval.
• Balancing parental rights youth rights.
• Experience lack of clarity re parental
  permission requirements
• However
• Youths coming out at younger ages.
• Knowledge for direct practice.
• Knowledge for policy making.
• Program evaluation.

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State Laws Vary Regarding

• Age of majority
• Emancipation status
• Mature minor rule
• Age of consent for general medical care
• Age of consent for specific treatments
• Few states have regulations that apply to
  research.

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Setting the Research Agenda

• What are our experiences w/ IRBs?
• What policies do IRBs follow re research w/
  minors? W/ GLBT minors?
• What barriers do our proposals face w/ IRBs?
• What strategies help w/ IRBs?
• What procedures are IRBs approving to protect
  GLBT minors as human subjects?
• Are there better procedures, in our view?

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The Ethical Challenges in Conducting Research
with GLBT Youths

• Research questions
• How we identify our population
• Minimizing risks
• Informed consent issues
• Waivers of parental permission
• Alternative mechanisms
• Confidentiality issues

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Minimizing RisksFeatures of the Research
Research Setting

• Data Collection Sites
• GLBT youth agencies groups
• College classes GLBT groups
• School-based Gay-Straight Alliances
• GLBT community events
• Street outreach other youth programs
• Public libraries, restaurants, other public
  spaces
• Data Collection Methods
• Face-to-face interviews
• Self-report questionnaires
• Telephone interviews

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Minimizing RisksFeatures of the Research
Research Setting

• Procedures Safeguards
• Certificates of Confidentiality
• Debriefing
• Clinical backup services (e.g., mental health
  resources, medical care)
• Potential jeopardy posed if youths
• Take surveys home.
• Take copies of assent forms home.

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Informed ConsentWaivers of Parental Permission

• Support for Waivers
• Federal state laws re consent for treatment.
• National Commission for the Protection of Human
  Subjects of Biomedical and Behavioral Research
  (1977)
• DHHS, Institutional Review Board Guidebook
  (Penslar, 1993)
• Institute of Medicine Report (Field Behrman,
  2004)
• In Practice
• Approved for all youths
• Approved for some youths

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Informed ConsentAlternative Mechanisms to
Protect Youth

• Comprehensive explanations of study.
• Consultation w/ director of sponsoring CBO re
  undisclosed youths.
• Another adult allowed to give consent.
• Agency acts in loco parentis.
• Participant advocates.

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Participant Consultation Model

• Using GLBT youths and families as consultants re
  ethical issues.
• Co-learners.
• Collaborative relationship.
• Congruent w/ social works ecological strengths
  perspectives.
• Grounded in feminist principles of mutuality,
  partnership, a relational perspective.

(Fisher, 2003)
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Setting the Research Agenda

• What are the potential negative positive
  consequences that GLBT youths their parents
  perceive to be associated with research
  participation?
• Stigma
• Discrimination
• Victimization
• Unplanned disclosures
• Emotional distress
• Pathologizing of GLBT youth
• Homelessness

• Pride
• Connection
• Self-awareness
• Enhance knowledge
• Inform policy
• Inform practice

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Setting the Research Agenda

• How do their perceptions of risks benefits vary
  by particular characteristics of the research
  study?
• Research topics
• Recruitment strategies
• Method of data collection
• Research site
• Investigator interviewer characteristics
• Youths characteristics (age, gender identity,
  sexual identity, racial-ethnic identity, SES)
• Youths disclosure status degree of openness
  across environments
• Under what circumstances are the perceptions of
  GLBT youths, their parents, researchers, IRB
  members similar or different?

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Setting the Research Agenda

• Under what conditions do GLBT youths their
  parents support waivers of parental permission,
  written parental consent, breaks in
  confidentiality?
• Research topics
• Recruitment strategies
• Method of data collection
• Research site
• Investigator interviewer characteristics
• Youths characteristics (age, gender identity,
  sexual identity, racial-ethnic identity, SES)
• Youths disclosure status degree of openness
  across environments
• Under what conditions are the opinions of GLBT
  youths, parents, researchers, IRB members
  similar or different?

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Conclusions

• Conduct research on IRB treatment of GLBT-focused
  proposals.
• Share strategies related to navigating IRBs.
• Set an agenda for the investigation of ethical
  issues involved in the conduct of research w/
  GLBT youths families.
• Use GLBT youths parents as consultants.