Assessing Minor Children’s Readiness to Receive Genetic Information

评估未成年儿童接受遗传信息的准备情况

• 批准号: 10283134
• 负责人: Kelsey Stuttgen Finn
• 金额: --
• 依托单位: MAYO CLINIC ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-22 至 2021-12-17
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10283134
• 关键词: Address; Adolescent; Adult; Affect; Attitude; Bioethics; Child; Child Development; Child Psychology; Childhood; Cognitive; Communication; Data; Development; Distress; Elements; Event; Family member; Fright; Future; Genetic; Genetic Diseases; Genetic Risk; Genomics; Health; Health Professional; Health behavior; Individual; Institutes; International; Internet; Intervention; Interview; Knowledge; Lead; Learning; Minnesota; Minor; Outcome; Outcomes Research; Parent-Child Relations; Parents; Perception; Policies; Positioning Attribute; Procedures; Process; Provider; Readiness; Reading; Research; Research Methodology; Risk; Siblings; Source; Structure; Test Result; Testing; Thinking; Training; Trust; United States; Universities; Work; base; cognitive capacity; comparative; design; developmental psychology; ethical legal social implication; experience; genetic counselor; genetic disorder diagnosis; genetic information; genetic testing; improved; insight; member; novel; psychosocial; symposium; therapy design

More and more people are receiving genetic and genomic sequencing with the assumption that this will improve health outcomes and/or health behaviors (14). However, these tests are being utilized with an incomplete understanding of the implications of genetic risk information on individuals and their family members (50). Existing studies on this topic have largely focused on adults (4, 8-10). There is comparatively little information about the implications of parental genetic information on minor children (35, 39, 40). This gap matters because many parents now routinely receive genetic test results (22). Though parents may not want to burden their children with distressing information, data indicate that it is crucial for parents to adequately and/or accurately communicate about genetic risk information with their children, particularly adolescent children (1, 12). While data suggests this information should be communicated to minor children, very little data exists on when and how to communicate this to minor children, leaving parents and providers in the dark. In order to sufficiently examine questions of when and how to communicate parental genetic information to minor children, it is paramount to consider a child’s own unique developmental stage, cognitive capacity, and ability to cope with such information. To properly address this subject, the fields of pediatric bioethics, genetics, and child psychology must be applied. I am uniquely positioned to conduct this research, since I have expertise in pediatric bioethics and genetics. However, I need rigorous training in child psychology which I will obtain through: 2 years of course work at the Institute of Child Development at the University of Minnesota, advisory boards consisting of 12 members who are internationally renowned thought leaders in the field, directed readings, and national conferences. Using knowledge and research methods gained from two years of this training child psychology, I will conduct in-depth semi-structured interviews with parent-child pairs at risk for and affected by three different genetic conditions. These interviews will richly characterize both parent and child experiences with and perspectives on communicating parental genetic risk information and assess the perceived readiness of the minor child to receive parental genetic risk information from both the perspective of the parent and minor child. The proposed study will generate novel data on minor’s readiness to receive parental genetic risk information, how both parents and minor children think about the communication process, the values of each parents and minor children, and potential divergences between how parents and minor children think about the communication process. The proposed study will also generate elements of an intervention that may be used by parents and/or health professionals to assess minor children’s readiness to receive genetic risk information, based a child’s unique developmental stage and cognitive capacity. This intervention will be piloted and validated in my future work.

越来越多的人正在接受基因和基因组测序，并假设这将 改善健康结果和/或健康行为（14）。然而，这些测试正在与 不完全了解遗传风险信息对个人及其家庭的影响 成员（50）。关于这个主题的现有研究主要集中在成年人（4，8-10）。相对而言， 关于父母遗传信息对未成年子女的影响的信息很少（35，39，40）。这 差距问题，因为许多父母现在定期收到基因测试结果（22）。虽然父母可能不会 如果父母不想让孩子承受痛苦的信息，数据表明，父母必须 充分和/或准确地与子女沟通遗传风险信息，特别是 青少年儿童（1，12）。虽然数据显示这些信息应该传达给未成年儿童， 关于何时以及如何向未成年儿童传达这一信息的数据很少， 黑暗中为了充分研究何时以及如何传递父母遗传信息的问题， 在向未成年儿童提供信息时，最重要的是要考虑儿童自身独特的发展阶段， 能力和能力来科普这些信息。为了正确地解决这个问题，儿科领域 必须应用生物伦理学、遗传学和儿童心理学。我是进行这项研究的唯一人选， 因为我在儿科生物伦理学和遗传学方面有专长不过，我需要严格的儿童心理学训练 我将通过以下方式获得：在哥伦比亚大学儿童发展研究所学习2年课程。 明尼苏达州，咨询委员会由12名成员组成，他们是国际知名的思想领袖， 现场指导阅读和全国会议。利用从两个国家获得的知识和研究方法， 多年的儿童心理学培训，我会进行深度的半结构化亲子访谈 两个人有三种不同的遗传病风险并受其影响。这些采访将充分描述 父母和孩子的经验和观点，沟通父母的遗传风险信息， 评估未成年子女接受父母遗传风险信息的感知准备情况， 父母和未成年子女的观点。拟议的研究将产生关于未成年人是否准备好 收到父母的遗传风险信息，父母和未成年子女如何看待沟通 过程，每个父母和未成年子女的价值观，以及父母和 未成年人思考沟通的过程。拟议的研究还将产生一个 父母和/或卫生专业人员可能使用的干预措施，以评估未成年儿童是否准备好 根据儿童独特的发育阶段和认知能力，接受遗传风险信息。这 我将在今后的工作中进行试点和验证。