Original article: ethicsTruth and consequences: ethics, confidentiality, and disclosure in adolescent longitudinal prevention research
Section snippets
Guidelines and laws directing research
Current guidelines concerning issues of confidentiality, disclosure, and informed consent, as applied to research with minors, are incomplete. Title 45 Code of Federal Regulations Part 46 (The Code) is generally viewed as the accepted standard for the protection of human subjects [5]. Although the Code does have a separate section focused on research involving children, it does not differentiate between adolescents and young children [5]. The Code does not provide any guidance on the
Study design and sample
The study used baseline data gathered from a 1-year longitudinal, randomized controlled effectiveness trial of a brief office-based intervention to prevent or delay adolescent alcohol use. All adolescents between the ages of 12 and 17 years, who received a general health examination during the study period with any one of the 27 participating providers at five pediatric primary care practices in the Washington, DC metropolitan area, were eligible to participate in the study.
Survey procedures and measures
Parents of eligible
Results
Demographic characteristics of participants in the randomized controlled trial overall and by wave are represented inTable 3. The sample was comprised of slightly more females than males. Roughly 60% of the participants were between 14 and 17 years of age, and approximately 80% were African-American. A higher percentage of participants in Wave #2 of the study were African-Americans, 85.6% in Wave #2 versus 75.3% in Wave #1 were African-American (p = .008). Providers at one study site no longer
Discussion
This longitudinal alcohol prevention research project allowed for a natural experiment to study the impact on adolescents’ reports of suicidal thoughts when the confidentiality agreement regarding such thoughts was changed midway through the project. Results suggested that conditional confidentiality agreements appear to have a censuring effect on adolescent reporting of suicidal thoughts. After being informed that their parent and provider would be notified if they reported suicidal thoughts,
Summary
Adolescents who assent to participate in research studies may be less likely to self-disclose personal information that may suggest mental distress if they know such disclosures will necessitate a breach in their confidentiality agreement. Unless researchers can guarantee adolescents full privacy for any self-disclosures, they may be unable to answer important research questions regarding adolescents’ mental health. These issues underscore the broader need for guidelines that more specifically
Acknowledgements
The authors thank Judith Jerry, Kathleen O’Connor, and Wilhelmena Lee-Ougo for their assistance in this research. This research was supported by a grant (Grant #: RO1AA1225701) from the National Institute on Alcohol Abuse and Alcoholism (Bradley Boekeloo, Principal Investigator).
References (34)
- et al.
Access to medical care for adolescentsResults from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls
J Adolesc Health
(1999) - et al.
Are researchers bound by child abuse reporting laws?
Child Abuse Negl
(1999) Ethical issues in research with abused children
Child Abuse Negl
(1985)- et al.
Choice of research setting in understanding adolescent health problems
J Adolesc Health
(1995) - et al.
Impact of parental consent and notification policies on the decisions of adolescents to be tested for HIV
J Adolesc Health
(2001) - et al.
Delivery of confidentiality assurances to adolescents by primary care physicians
J Adolesc Health
(1996) - et al.
Effect of mandatory parental notification on adolescent girls’ use of sexual health care services
JAMA
(2002) - et al.
Influence of physician confidentiality assurances on adolescents’ willingness to disclose information and seek future health care
JAMA
(1997) - et al.
Confidentiality in health care
JAMA
(1993) - Department of Health and Human Services, National Institutes of Health. Protection of Human Subjects. 45 Code of...
Referring and reporting research participants at riskViews from urban adolescents
Child Dev
Guidelines for adolescent health research
J Adolesc Health
Ethical problems in research on risky behaviors and risky populations
Ethics Behav
APA’s ethical principles of psychologists and code of conduct
Am Psychol
The certificate of confidentiality at the National Institute of Mental Health. Discretionary considerations in its applicability in research on child and adolescent mental disorders
Ethics Behav
Ethical and legal issues in research and intervention
J Adolesc Health Care
Cited by (64)
Engaging Adolescents in Contemporary Longitudinal Health Research: Strategies for Promoting Participation and Retention
2024, Journal of Adolescent HealthBiomedical ethics and clinical oversight in multisite observational neuroimaging studies with children and adolescents: The ABCD experience
2018, Developmental Cognitive NeuroscienceCitation Excerpt :These procedures must also encourage participant engagement in ongoing decision making with regard to whether or not to participate in specific aspects of the study, and whether or not to provide specific information. Adolescents are generally more willing to provide sensitive information, such as reports of substance use or suicidal thoughts, under conditions of full confidentiality (Ford et al., 1997; Lothen-Kline et al., 2003); they also favor referrals and assistance for suicidal ideation (Fisher, 2003; Fisher et al., 1996; O’Sullivan and Fisher, 1997). Minor participants may find disclosure of a particular risky behavior, such as substance use, irrelevant if able to respond that they have not engaged in the behavior.
Victimization, Suicidal Ideation, and Alcohol Use From Age 13 to 15 Years: Support for the Self-Medication Model
2017, Journal of Adolescent HealthCitation Excerpt :Third, the use of self-report and single items to assess alcohol use and suicidal ideation could be another limitation. However, single-item self-report measures of substance use and suicide ideation are commonly used and have been shown to be a valid source for such sensitive questions [29,38,39], particularly when confidentiality is guaranteed, as was the case in the present study. For example, some studies have shown that by guaranteeing confidentiality prevalence of self-reported suicidal thoughts averages 8% but plummets to 1% when confidentiality is not guaranteed [29].
Associations between Peer Victimization and Suicidal Ideation and Suicide Attempt during Adolescence: Results from a Prospective Population-Based Birth Cohort
2016, Journal of the American Academy of Child and Adolescent PsychiatryCitation Excerpt :Informed written consent was obtained from all participating parents at each assessment and from adolescents at the 15-year assessment. Adolescents were assured confidentiality, which is essential to ensure reliability of self-reports.21 All adolescents and their parents were provided with a list of resources in case of needing help.