Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Ohio, Cincinnati, USA.
College of Medicine, University of Cincinnati, Cincinnati, Ohio, USA.
J Genet Couns. 2024 Jun;33(3):653-665. doi: 10.1002/jgc4.1768. Epub 2023 Aug 26.
Young adults have increasing genomic testing opportunities; however, little is known about how equipped they feel about making decisions to learn personal genomic information. We conducted qualitative interviews with 19 young adults, ages 18-21 years old, enrolled in a research study where they made decisions about learning personal genomic risk for developing preventable, treatable, and adult-onset conditions and carrier status for autosomal recessive conditions. Participants had the option to include a parent in their study visit and the decision-making process. The goal of this project was to explore young adults' reasons for involving or not involving a parent in the study and to assess young adults' perspectives about parental roles in their healthcare. Nine participants included a parent in the study and ten did not include a parent. Eleven participants received genomic test results before the interview, while eight participants had not yet received their results at the time of the interview. The study team developed a coding guide and coded interview transcripts inductively and deductively using an interpretive descriptive-analytic approach. Logistical issues dominated solo participants' reasons for not involving a parent in the study, whereas those who involved a parent often cited a close relationship with the parent and the parent's previous involvement in the participant's healthcare as reasons for involving them. Both groups of participants described gradually transitioning to independent healthcare decision-making with age and felt their comfort in medical decision-making depends on the severity of and their familiarity with the situation. Participants recommended that future genomic researchers or clinicians give young adults the option to involve a parent or friend as a support person in research or clinical visits. Although young adults may have different journeys toward independent healthcare decision-making, some may benefit from continued parental or peer involvement after reaching the age of legal adulthood.
年轻人有越来越多的基因组测试机会；然而，对于他们对学习个人基因组信息做出决策的能力，我们知之甚少。我们对 19 名年龄在 18-21 岁之间的年轻人进行了定性访谈，他们参加了一项研究，在该研究中，他们决定是否学习个人基因组信息，以了解可预防、可治疗和成人发病的疾病以及常染色体隐性疾病的携带者状态。参与者可以选择让父母参加他们的研究访问和决策过程。该项目的目标是探讨年轻人参与或不参与父母研究的原因，并评估年轻人对父母在其医疗保健中角色的看法。九名参与者让父母参与了研究，十名参与者没有让父母参与。11 名参与者在接受采访前收到了基因组测试结果，而 8 名参与者在接受采访时尚未收到结果。研究小组使用解释性描述分析方法，从归纳和演绎两个方面制定了编码指南，并对访谈记录进行了编码。对于那些独自参与研究的人来说，逻辑问题是他们不希望父母参与的主要原因，而那些让父母参与的人通常会提到与父母的亲密关系以及父母以前在参与者医疗保健中的参与情况是他们让父母参与的原因。两组参与者都描述了随着年龄的增长逐渐过渡到独立的医疗保健决策，并且他们在医疗决策中的舒适度取决于情况的严重程度和他们对情况的熟悉程度。参与者建议未来的基因组研究人员或临床医生给年轻人一个选择，让他们在研究或临床访问中选择让父母或朋友作为支持人员参与。尽管年轻人在独立医疗保健决策方面可能有不同的旅程，但有些人可能会从成年后继续得到父母或同龄人的参与中受益。
