Without Parental Consent: Conducting Research With Homeless Adolescents

Abstract

ISSUES AND PURPOSE. To identify the ethical and legal implications of conducting research with homeless adolescents and to discuss guidelines for conducting research without parental consent. CONCLUSIONS. Ethical principles of capacity, risk, postponement, and truthful disclosure within the context of the rights of minors to consent to healthcare treatment form the basis of the argument for allowing adolescents to consent to participate in research without parental consent when there is minimal risk or when such consent could place them at increased risk for harm. PRACTICE IMPLICATIONS. Adolescents who are the target population for clinical research or who are intended recipients of nursing care should be involved in setting priorities, purposes, and protocols. Parents and other adults from their communities should be included in developing strategies to protect their confidentiality and privacy while helping them achieve autonomy in making informed health‐related decisions.

Adolescent Consent: Choosing the Right Path

“…The law recognizes informed consent as valid when given by a fully autonomous person. Most research indicates that adolescents 15 years of age and older have the cognitive ability and autonomy to participate in fully informed consent (Bruzzese & Fisher, 2003;Rew, Taylor-Seehafer, & Thomas, 2000;Weithorn & Campbell, 1982).…”

“…Many investigators hesitate to include adolescents in research due to issues with "getting through" the Institutional Review Board (IRBs) process, difficulty in obtaining parental consent, and concern for the legalities associated with research without parental consent (Bruzzese & Fisher, 2003;Fisher & Wallace, 2000;Rew, Taylor-Seehafer, & Thomas, 2000). While entities such as IRBs are intended to protect adolescents, confusion surrounding the regulations related to recruiting adolescents as research subjects has erected barriers to adolescent participation in research studies.…”

NorthBEAT’s Capacity-to-Consent Protocol for Obtaining Informed Consent from Youth Evaluation Participants: An Alternative to Parental Consent

“…For example, evaluators may be reluctant to include youth in their studies due to practical concerns about getting parental consent and legal concerns about not getting such consent (Bruzzese & Fisher, 2003;Fisher & Wallace, 2000; Heath et al, 2007; Hester, 2004;Rew, Taylor-Seehafer, & Thomas, 2000). Especially for sensitive topics, youth may be unwilling to seek parental permission, or parents may be unwilling to give it (Flicker & Guta, 2008; Hester, 2004;Mustanski, 2011).…”

The Experiences of Street Involved Youth Living in the North.

“…Thus, the requirement for guardian consent with this population is often waived because many have suffered abuse or neglect by their caregivers (English, 1995;Rew et al, 2000). Enforcing guardian permission may jeopardize the safety and well-being of the youth and discourage their participation in research (Ensign, 2003;Rew et al, 2000).…”

“…Enforcing guardian permission may jeopardize the safety and well-being of the youth and discourage their participation in research (Ensign, 2003;Rew et al, 2000). The researcher must act in the best interest of the participant (beneficence) and refrain from actions that may risk harm (nonmaleficence) (Sheppard & Schulz, 2007).…”