Literature DB >> 26956988

Self-Consent for HIV Prevention Research Involving Sexual and Gender Minority Youth: Reducing Barriers Through Evidence-Based Ethics.

Celia B Fisher1, Miriam R Arbeit2, Melissa S Dumont2, Kathryn Macapagal3, Brian Mustanski3.   

Abstract

This project examined the attitudes of sexual and gender minority youth (SGMY) toward guardian permission for a pre-exposure prophylaxis (PrEP) adherence trial and their preparedness to provide informed, rational, and voluntary self-consent. Sixty sexually active SGMY (ages 14-17) participated in online survey and asynchronous focus group questions after watching a video describing a PrEP adherence study. Youth responses highlighted guardian permission as a significant barrier to research participation, especially for those not "out" to families. Youth demonstrated understanding of research benefits, medical side effects, confidentiality risks, and random assignment and felt comfortable asking questions and declining participation. Reasoning about participation indicated consideration of health risks and benefits, personal sexual behavior, ability to take pills every day, logistics, and post-trial access to PrEP. Results demonstrate youth's ability to self-consent to age- and population-appropriate procedures, and underscore the value of empirical studies for informing institutional review board (IRB) protections of SGMY research participants.
© The Author(s) 2016.

Entities:  

Keywords:  HIV prevention; adolescent medicine; ethics; gender identity; informed consent by minors; pre-exposure prophylaxis; research; sexual orientation

Mesh:

Year:  2016        PMID: 26956988      PMCID: PMC4842126          DOI: 10.1177/1556264616633963

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  42 in total

1.  Guidelines for adolescent health research. A position paper of the Society for Adolescent Medicine.

Authors:  John S Santelli; Audrey Smith Rogers; Walter D Rosenfeld; Robert H DuRant; Nancy Dubler; Madlyn Morreale; Abigail English; Sheryl Lyss; Yolanda Wimberly; Anna Schissel
Journal:  J Adolesc Health       Date:  2003-11       Impact factor: 5.012

2.  Sexual Orientation and Risk of Pregnancy Among New York City High-School Students.

Authors:  Lisa L Lindley; Katrina M Walsemann
Journal:  Am J Public Health       Date:  2015-05-14       Impact factor: 9.308

3.  Through the community looking glass: reevaluating the ethical and policy implications of research on adolescent risk and sociopathology.

Authors:  C B Fisher; S A Wallace
Journal:  Ethics Behav       Date:  2000

4.  The measurement of observer agreement for categorical data.

Authors:  J R Landis; G G Koch
Journal:  Biometrics       Date:  1977-03       Impact factor: 2.571

5.  Competency to consent to research: a psychiatric overview.

Authors:  P S Appelbaum; L H Roth
Journal:  Arch Gen Psychiatry       Date:  1982-08

6.  Willingness to Take PrEP and Potential for Risk Compensation Among Highly Sexually Active Gay and Bisexual Men.

Authors:  Christian Grov; Thomas H F Whitfield; H Jonathon Rendina; Ana Ventuneac; Jeffrey T Parsons
Journal:  AIDS Behav       Date:  2015-12

7.  Re-shaping HIV Interventions with Technology.

Authors:  Amy Ragsdale; Mary Jane Rotheram-Borus
Journal:  AIDS Behav       Date:  2015-06

8.  The science of being a study participant: FEM-PrEP participants' explanations for overreporting adherence to the study pills and for the whereabouts of unused pills.

Authors:  Amy L Corneli; Kevin McKenna; Brian Perry; Khatija Ahmed; Kawango Agot; Fulufhelo Malamatsho; Joseph Skhosana; Jacob Odhiambo; Lut Van Damme
Journal:  J Acquir Immune Defic Syndr       Date:  2015-04-15       Impact factor: 3.731

9.  Determinants of enrollment in a preventive HIV vaccine trial: hypothetical versus actual willingness and barriers to participation.

Authors:  Susan P Buchbinder; Barbara Metch; Sarah E Holte; Susan Scheer; Anne Coletti; Eric Vittinghoff
Journal:  J Acquir Immune Defic Syndr       Date:  2004-05-01       Impact factor: 3.731

10.  The HIV and Drug Abuse Prevention Research Ethics Training Institute: Training Early-Career Scientists to Conduct Research on Research Ethics.

Authors:  Celia B Fisher; Elizabeth Yuko
Journal:  J Empir Res Hum Res Ethics       Date:  2015-12       Impact factor: 1.742

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  37 in total

1.  Is Guardian Permission a Barrier to Online Sexual Health Research Among Adolescent Males Interested in Sex With Males?

Authors:  Kimberly M Nelson; Michael P Carey; Celia B Fisher
Journal:  J Sex Res       Date:  2018-06-28

2.  Sexual and Gender Minority Adolescents' Views On HIV Research Participation and Parental Permission: A Mixed-Methods Study.

Authors:  Brian Mustanski; Ryan Coventry; Kathryn Macapagal; Miriam R Arbeit; Celia B Fisher
Journal:  Perspect Sex Reprod Health       Date:  2017-04-26

3.  Adolescent and Parent Perceptions about Participation in Biomedical Sexual Health Trials.

Authors:  Sara E Landers; Jenny K R Francis; Marilyn C Morris; Christine Mauro; Susan L Rosenthal
Journal:  Ethics Hum Res       Date:  2020-05

4.  Bisexual Invisibility and the Sexual Health Needs of Adolescent Girls.

Authors:  Miriam R Arbeit; Celia B Fisher; Kathryn Macapagal; Brian Mustanski
Journal:  LGBT Health       Date:  2016-09-07       Impact factor: 4.151

5.  "I think the parent should be there because no one was born alone": Kenyan adolescents' perspectives on parental involvement in HIV research.

Authors:  Allison K Groves; Denise D Hallfors; Bonita J Iritani; Stuart Rennie; Fredrick S Odongo; Daniel Kwaro; Nyaguara Amek; Winnie K Luseno
Journal:  Afr J AIDS Res       Date:  2018-10-14       Impact factor: 1.300

6.  PrEP Awareness, Uptake, Barriers, and Correlates Among Adolescents Assigned Male at Birth Who Have Sex with Males in the U.S.

Authors:  Kathryn Macapagal; Ashley Kraus; Aaron K Korpak; Kyle Jozsa; David A Moskowitz
Journal:  Arch Sex Behav       Date:  2019-10-10

7.  Patient-Provider Communication Barriers and Facilitators to HIV and STI Preventive Services for Adolescent MSM.

Authors:  Celia B Fisher; Adam L Fried; Kathryn Macapagal; Brian Mustanski
Journal:  AIDS Behav       Date:  2018-10

8.  "I Won't Out Myself Just to Do a Survey": Sexual and Gender Minority Adolescents' Perspectives on the Risks and Benefits of Sex Research.

Authors:  Kathryn Macapagal; Ryan Coventry; Miriam R Arbeit; Celia B Fisher; Brian Mustanski
Journal:  Arch Sex Behav       Date:  2016-07-28

9.  HIV Rates Are Increasing in Gay/Bisexual Teens: IRB Barriers to Research Must Be Resolved to Bend the Curve.

Authors:  Brian Mustanski; Celia B Fisher
Journal:  Am J Prev Med       Date:  2016-04-06       Impact factor: 5.043

10.  Risks and Benefits of Adolescent Girls' Participation in Online Sexting Survey Research.

Authors:  Xiangyu Tao; Elise Bragard; Celia B Fisher
Journal:  Arch Sex Behav       Date:  2021-08-10
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