Review articleResearch on tobacco use among teenagers: ethical challenges1
Section snippets
General considerations
Ethical aspects of research on teen smoking fall within the broader context of research ethics and are based on the principles of respect for autonomy of subjects, beneficence, and justice, as described in previous documents, such as the 1979 Belmont Report [15] and the 1964 Declaration of Helsinki [16]. The challenge remains how to apply them to the practical conduct of research with teenagers, considering that adolescence constitutes a transitional phase of life when issues and concerns
The consent process
A key aspect of obtaining informed consent is ensuring that participants understand the procedures involved, the potential risks as well as benefits from participating in the research, and the alternatives to participation. Several studies have reported on aspects of the decision-making capacity of children to participate in research [19]. Our focus in this paper is on adolescent minors, among whom there is considerable variation in cognitive abilities. Researchers need to carefully consider
Risks and benefits
The principle of beneficence mandates an appropriate risk-benefit ratio for any research study. Federal guidelines require that research risks are justified and reasonable with respect to the anticipated benefits for the research participants and society [21]. As teenagers could be exposed to experiences that result in harm that is minor or serious and transient or permanent, consideration of several categories of risk is important. Ascribing a risk category to a research project is the
Confidentiality
The issue of confidentiality is particularly important in research on adolescent tobacco use. Because it is illegal to sell cigarettes to a minor or, in many states, for a minor to possess cigarettes, cigarette smoking by teens may constitute a form of illegal substance use or a punishable behavior. A teenager may thus not readily disclose smoking status to parents or to other authorities, and it is incumbent on research teams to protect the adolescent’s confidentiality, which may also affect
Recruitment and retention
Researchers generally agree that recruitment can be the most challenging aspect of conducting research with teens [35]. The setting (i.e., school, laboratory, clinic, or other), type of study, and other variables will likely shape the strategies for recruitment of adolescents of various age groups, genders, and ethnicities into smoking studies. One crucial question to address is how researchers can ethically recruit teenagers.
Ensuring confidentiality is critical when the research concerns a
Compensation
Questions of timing, beneficiary, and amount of compensation arise commonly when seeking to improve recruitment and retention of participants. Remuneration of teenage research participants may be justified to reimburse them for expenses incurred (e.g., transportation), reduce their personal financial sacrifice (if they are using work time), and to compensate for time and effort. Compensation, however, should not be described as a benefit of participation in a research study. Participant payment
Etiologic/epidemiologic studies involving families
There are several ethical and logistical dilemmas that arise in conducting family studies related to adolescent tobacco use. For example, genetic analyses are important for helping to answer questions about the heritability of tobacco use and nicotine dependence, and studies of family environment or mediating factors might help explain the link between parent and child smoking. Concerns have been expressed that genetic information may be used to stigmatize or discriminate against individuals in
Summary and conclusions
It has become increasingly clear that more research on teenage smoking is needed. Careful attention to the specific ethical issues that affect adolescent tobacco use research should help to increase the field’s ability to move forward on challenging research studies involving youth. From a practical standpoint, certain developmental and sociolegal features of adolescence should prompt adjustments geared to address the challenges and potential barriers that researchers may encounter. For
Acknowledgments
We are grateful to Drs. David Gorelick and Thiri Aung, as well as the staff of the Teen Tobacco Addiction Treatment Research Clinic for their contributions to this manuscript.
References (47)
- et al.
Nicotine addiction, a pediatric disease
J Pediatr
(1997) - et al.
Patterns of smoking among inner-city teenagersSmoking has a pediatric age of onset
J Adolesc Health
(1997) - et al.
A review of tobacco smoking in adolescentsTreatment implications
J Am Acad Child Adolesc Psychiatry
(2000) - et al.
Predictors of smoking cessation in U.S. adolescents
Am J Prev Med
(1999) - et al.
Ethical issues in biological and psychiatric research with children and adolescents
J Am Acad Child Adolesc Psychiatry
(1995) Adolescents as research subjects without permission of their parents or guardiansEthical considerations
J Adolesc Health
(1995)- et al.
Participation in biomedical researchThe consent process as viewed by children, adolescents, young adults, and physicians
J Pediatr
(1992) - et al.
Informed consent in children and adolescentsAge, maturation and psychological state
J Adolesc Health
(1995) Therapeutic orphans
J Pediatr
(1968)Runaway and street youth at risk for HIV infectionLegal and ethical issues in access to care
J Adolesc Health
(1991)
Obtaining written parent permission for school-based health surveys of urban young adolescents
J Adolesc Health
Population-based recruitment for quit-smoking programsAn analytic review of communication variables
Prev Med
Ethics are localEngaging cross-cultural variation in the ethics for clinical research
Soc Sci Med
The Monitoring the Future National Survey Results on Adolescent Drug UseOverview of Key Findings, 2000
Reducing the Health Consequences of Smoking—25 Years of ProgressA report of the Surgeon General
Early age at smoking initiation and tobacco carcinogen DNA damage in the lung
J Natl Cancer Inst
NIH Policy and Guidelines on the Inclusion of Children as Participants in Research Involving Human Subjects
Challenges in medication clinical trials
Psychopharmacol Bull
Ethical implications of pediatric drug research policy initiatives
IRBA Review of Human Subjects Research
Initial tobacco use episodes in children and adolescentsCurrent knowledge, future directions
Drug Alcohol Depend
The Belmont ReportEthical Principles and Guidelines for the Protection of Human Subjects of Research
Declaration of HelsinkiEthical Principles for Medical Research Involving Human Subjects
Cited by (67)
Participation in group music therapy: A preliminary study of the experiences and perceptions of adolescents who stammer
2021, Arts in PsychotherapyCitation Excerpt :Given the considerable impact stammering can have, the reported benefits and recommendations in this study are encouraging because of the potential implications for supporting adolescents who stammer, and for the possible inclusion of music therapy in the management of stammering. Moolchan and Mermelstein (2002) report how recruitment is a challenging aspect of research with adolescent participants. Of the eleven adolescents who stammer who participated in group music therapy sessions, just four took part in follow-up interviews.
High-dose and low-dose varenicline for smoking cessation in adolescents: a randomised, placebo-controlled trial
2020, The Lancet Child and Adolescent HealthCitation Excerpt :Individuals aged 18 years and older provided written informed consent. The study, including the informed consent and assent process, was done with attention to ethical issues specific to adolescent tobacco cessation, and in accordance with the general principles set forth in the International Ethical Guidelines for Biomedical Research Involving Human Subjects, Guidelines for Good Clinical Practice, and the Declaration of Helsinki.15–18 Participants were randomly assigned, by use of computer-generated block randomisation within each site, to receive 12 weeks of high-dose varenicline, low-dose varenicline, or placebo in a 1:1:1 ratio.
A systematic review and meta-evaluation of adolescent smoking cessation interventions that utilized nicotine replacement therapy
2016, Addictive BehaviorsCitation Excerpt :Finally, we have to consider that research among this population in itself presents numerous barriers. As Moolchan & Mermelstein (2002) discussed in a piece highlighting difficulties of research in adolescent tobacco cessation research, there are barriers at all stages, including consent, confidentiality, recruitment, retention, and compensation. Combined efforts among youth, parents, researchers, and clinicians to determine the best practice for all parties will be necessary to determine best practice in adolescent tobacco cessation.
Sample selection may bias the outcome of an adolescent mental health survey: Results from a five-year follow-up of 4171 adolescents
2015, Public HealthCitation Excerpt :Studies concerning adolescent substance abuse are among the most problematic in terms of participation and parental consent.28 Adolescents prefer to hide their adverse behavior or abuse, particularly from their parents, and the active demand for parental consent may reduce the participation of adolescents with problem behavior.29,30 Cognitive functions were subjectively evaluated in this study using self-rated school performance in various school subjects.
- 1
The full text of this article is available online via http://www.elsevier.com/locate/jahonline.