PSYCH 660 Week 3 Informed Consent and Confidentiality Example

"Sometimes I Don't Want to Wake Up": A Teen Participant's Survey Comment, the Limits of Confidentiality and What Consent Should Have Said

[Student Name]

University of Phoenix

PSYCH/660: Ethics and Professional Issues

Week 3 Assignment

[Instructor Name]

[Date]

The lab, the participant and the comment are composites written for a model paper; ethical standards and research findings come from the sources listed.

Informed consent and confidentiality are the foundation of trust between researchers and participants. Their limits are tested when a participant discloses something that suggests risk. This paper examines such a moment in the teen sleep study run by the lab where I coordinate research.

The Comment

Our study asks high school students to answer a short survey each morning about mood and sleep, with an optional comment box. One morning, reviewing incoming data, I read a comment from a sixteen-year-old participant: "sometimes I don't want to wake up." Her mood ratings had been low for five days. The consent form signed by her parent and the assent form she signed said that responses would be kept confidential and that parents would not see their child's individual data. Neither form explained what would happen if a participant disclosed thoughts of self-harm. The lab's safety protocol, approved by the review board, called for the principal investigator, a licensed psychologist, to be notified of any concerning responses within one business day.

What Valid Consent Requires

Informed consent requires that participants receive the information a reasonable person would need to decide, understand it, decide voluntarily and have the capacity to decide. The APA Ethics Code (American Psychological Association, 2017) requires psychologists to inform participants about the purpose, procedures, foreseeable risks, limits of confidentiality and their right to withdraw. With minors, researchers obtain permission from a parent and assent from the minor, explained in terms the minor can understand.

Our forms omitted a foreseeable situation: disclosure of risk. That gap now made the right response harder.

Do Participants Understand Consent?

Flory and Emanuel (2004) systematically reviewed studies testing interventions to improve participants' understanding of informed consent, including multimedia presentations, enhanced consent forms, extended discussion and test-and-feedback approaches. Multimedia and enhanced forms produced inconsistent improvements, while extended one-on-one discussion with a study team member or a neutral educator most consistently improved understanding. The authors concluded that person-to-person interaction was the most promising approach.

Our consent process consisted of forms sent home with brief instructions. Even if the forms had described limits of confidentiality, the participant might not have understood them.

What Teens Themselves Want

Fisher et al. (1996) asked urban adolescents how researchers should respond when a participant reveals that they are at risk, such as from suicidal thoughts, substance use or abuse. Most adolescents believed researchers should take action when a teen was in serious danger, either by referring the teen to help or by telling a parent or other adult, and many viewed doing nothing as uncaring. Views varied by the type of problem, with more support for reporting serious risks such as suicidal thoughts than for less dangerous behaviors.

This finding challenges the assumption that confidentiality is always what teens want; many expect adults to act when they disclose serious risk.

A promise of confidentiality that never mentioned this possibility left the lab choosing between two kinds of broken trust.

Handling Disclosures in Adolescent Research

Lothen-Kline et al. (2003) described how a longitudinal prevention study with adolescents handled confidentiality and disclosure. The researchers explained limits of confidentiality during consent, specifying that disclosures of suicidal intent or abuse would prompt follow-up, and developed a protocol in which trained staff contacted adolescents who reported suicidal ideation, assessed risk and arranged help, involving parents according to the level of risk and the adolescent's situation. They found that most adolescents who were contacted accepted help and remained in the study.

What We Did

The lab's protocol gave a clear first step, and the rest followed from what the participant said.

Following the protocol, I notified the principal investigator the same morning. She called the participant, introduced herself, asked how she was doing and conducted a brief risk assessment. The participant said she had felt hopeless since a breakup and had thought about not waking up but had no plan or intent and had not harmed herself. The psychologist gave her crisis line information, encouraged her to talk to her school counselor and asked whether she was comfortable with the lab contacting her mother; the participant agreed if she could be present. They spoke together that evening, and the mother arranged an appointment with the family's doctor. The participant chose to continue in the study.

Why the Gap Existed

Looking back, the omission was not careless so much as optimistic. The study did not ask about self-harm, so the team assumed such disclosures were unlikely. Yet any survey with an open comment box invites participants to share what is on their minds, and depressive symptoms are common among adolescents. A safety protocol existed for the team; what was missing was telling participants and parents about it. Consent forms describe what researchers plan to do, and they must also describe what researchers will do if the unplanned happens.

The Parent's Perspective

The participant's mother was grateful to be told and surprised that her daughter had shared her feelings with researchers rather than with her. She asked whether she could see her daughter's other survey responses. The psychologist explained that the study had promised teens that parents would not see individual data and that this promise had made her daughter's honest answer possible; the lab would share safety concerns but not routine responses. The mother accepted the explanation. Holding that line protected the trust that made the disclosure possible in the first place.

Balancing Autonomy and Safety

The response respected the participant's autonomy where possible, by asking permission and involving her in contacting her mother, while protecting her safety. Had she reported a plan or intent, the psychologist would have contacted her mother and emergency services immediately, regardless of consent language, since protecting life takes precedence and the code permits disclosure to protect others from harm.

Revising the Consent Process

The last step was to close the gap for every family still enrolled.

The lab revised its forms to include a plain-language paragraph: "If you tell us that you are thinking about hurting yourself, a psychologist on our team will contact you to make sure you are safe. If we believe you are in danger, we will tell your parent or guardian." The review board approved the change, and all current participants and parents received the revised language. We also added a short phone or video consent conversation with each family, based on evidence that discussion improves understanding.

The team also scheduled a follow-up call two weeks later, which the participant welcomed; she reported that she had started seeing a counselor at school.

Conclusion

A teen's survey comment exposed a gap in our consent process. Research on consent understanding, adolescents' views and disclosure procedures in prevention studies guided a response that protected her safety while respecting her voice, and led to consent materials that explain the limits of confidentiality before they are tested.

References

American Psychological Association. (2017). Ethical principles of psychologists and code of conduct (2002, amended effective June 1, 2010, and January 1, 2017). https://www.apa.org/ethics/code

Fisher, C. B., Higgins-D'Alessandro, A., Rau, J.-M. B., Kuther, T. L., & Belanger, S. (1996). Referring and reporting research participants at risk: Views from urban adolescents. Child Development, 67(5), 2086-2100. https://doi.org/10.2307/1131611

Flory, J., & Emanuel, E. (2004). Interventions to improve research participants' understanding in informed consent for research: A systematic review. JAMA, 292(13), 1593-1601. https://doi.org/10.1001/jama.292.13.1593

Lothen-Kline, C., Howard, D. E., Hamburger, E. K., Worrell, K. D., & Boekeloo, B. O. (2003). Truth and consequences: Ethics, confidentiality, and disclosure in adolescent longitudinal prevention research. Journal of Adolescent Health, 33(5), 385-394. https://doi.org/10.1016/S1054-139X(03)00184-8